Mon
July 06 2009
Message: Hello my old friends at RH website!
Maybe you remember me from years back, when I was a regular member of the site, blessed with Rutger’s friendship, and not to forget blessed with the support of all of you!
The last posts made about, and coming from me, were around the time my dear mother had passed on.
My HIV was progressed to full blown AIDS by then. I was already on a rather spicy dosage of morphine due to bone marrow inflammations as a result of HIV-meningitis and HIV-encephalitis.
In case one would wonder what the heck is HIV-meningitis/encephalitis, well it’s an inflammation in and around the brains. However with a regular person this would be caused by a bacterial infection. In the case of an HIV patient, it’s caused by the combination of a failing immune system and the HIV virus, which means it will not respond to antibiotics. It will only be cured by curing the immune system.. pretty tough to do with someone with AIDS.
Anyway, at that time, back in 2004 my life was slipping away. I remained in the care of my father who had some sort of combination of Alzheimer’s and schizophrenia, both without treatment, and he became violent towards me.
For months I had been laying flat on my back, hooked up on a morphine pump and somehow, slowly, the bone marrow inflammation had calmed down. I had damaged quite some nerves in my back but the silly thing was – or better said, a miracle on itself - the constant spasm in my muscles due to the nerve damage was the contra weight for the muscle weakness I have because of the handicap I am born with, and which lead to a disability that kept me in a wheelchair.
The spasms made my weak muscles just about strong enough to kick my father off me when he attacked me, and I was able to put a tiny bit of weight on my legs as well..
Yes..
I could stand up out of the chair!
But alas, there was no time to enjoy that miracle, I had to flee out of the house, into the safety of a senior building. Ok, I live amongst old people but I am safe.
Starfish saved my big butt in that time, by not only helping me with some furniture, clothing, because I had lost much weight and only had pajamas to wear since I had been so ill for so long I didn’t even have clothing my size. And the worst period was when Starfish even had to send me some money to buy food.. because I had nothing left and no one really helped me out, because arranging a lifeline takes time.. red tape… always red tape.
Well, balancing on the edge of life and death I tried to cope in my new home with my lovely dog Bo .
I tried to get back into an HIV therapy program, but that wasn’t possible. I had stopped taking HIV drugs in 2001 because I was resistant to most of the drugs and allergic to the drugs that still would work, or had such side effects that the quality of life was nowhere to be found. Nerve damage, stomach bleedings, and such a low count of blood platelets: I was about to die of spontaneous internal bleedings. So taking the drugs was no longer an option at that time.
But by the time I asked for a new try, they said I was too far gone. My T-cell count was 0 and my organs were starting to give up on me. The dosage of morphine I took through the pump should have killed a cow, and as far as the good doctor could tell, I would join that metaphorical cow within 3 months - if you know what I mean..
Then one of the doctors found a therapy combination of some drugs that might help. I would be partially (starting) resistant for some but it could at least give me some more time. I wanted to go and get that drug combination, but the doctor said I was so weak that I would die from the effects of a starting treatment and therefore he wouldn’t give it to me.
My AIDS buddy Tom insisted on giving me a chance, - if I had to die anyway, then rather trying to beat death then just waiting for it to come and get me. So, I signed a form and we started.
It was a struggle, laying on ICU, slipping in a cardiac arrest, coma.. the works. But I made it.
I gained strength, my immune systems started to build up and I started to live. I gained a lot of weight again, as I always do when I am on HIV treatment, but according to my dear doctor I’d better be fat then dead… yeah he has a point there hahahahaha!
I had to switch to several different sets of drugs after that, because I am resistant to as good as all HIV drugs. If a minor bit of a previous drug is used to make a new drug (as in ‘based on’) I will become totally resistant in a blink of an eye to that drug. The virus recognizes it and is armed against it.
Last year, since November 2008, my immune system fell down again. T-cell count around the dangerous area of 200 and lower.. AIDS level again.
I was resistant to the most important component of my combination. I became ill again and weaker ...and pretty darn scared.
My walking ability went up and down. Due to spinal cord injury from the bone marrow inflammation, I have partially paralyzed leg muscles, but I can walk. I had physical therapy for year and they taught me to walk short bits. First with a high metal brace around my leg and with the support of orthopedic shoes (also paid for by the RH Starfish Association!!!!! –kisssss-) but then I started to lose weight again due to the side effects of the drug that didn’t work anymore. Food went down the drain within 5 minutes.. so even though I was still a big girl, I had lost loads and loads. So the brace didn’t fit anymore. On the other hand losing the weight was less straining on the muscles so I trained myself in walking with only a crutch.. no brace.
Meanwhile, I became more ill and then they told me there were no new drugs for me. Well, there was a drug but that wasn’t strong enough to take over from the drug I was used to and it wouldn’t help to switch it for a lesser drug.
I was devastated but two months ago, in May, studies had proven that after a little while longer the drug would work just as strong for resistant people as the drug it has to replace in my case.
So.. we gave it a go. And guess what? My T-cell count is rising.. 650 now! (normal count for a healthy person is around 1100 approximately).

My life is ok for the moment. I picked up painting again (used to be an artist) and put my work on a site called Seesle. www.debbie.seesle.nl is my own page which I am proud of, and some of the paintings are used as front for real greeting cards at www.saluer.us .
I paint portraits, but mostly I paint nudes, rather erotic, which sell pretty well. I have commissions all the time of late! Really really great! This for instance is a commissioned portrait of a little boy..

And errrmmm here below is one... big boy

It’s a hobby which gives me the chance to forget everything around me, and I can go to sleep and rest when I get too tired. And every now and then I can sell one, which is great in itself of course.
I drive a powered 3-wheel scooter outdoors to walk my dog (she runs besides me or sits in between my legs) and to do my groceries with.
Often I told Rutger about my adventures on the scootmobile ( that’s how we call those wheelchairs in Dutch).. it’s nice in summer, and when I feel ok. But when I don’t feel ok and need to get back soon to be able to lay down in bed it is a nightmare. And with bad weather it’s a disaster.. soaking wet from rain or snow or hail.. pneumonia after pneumonia, bronchitis, sinusitis, and so on.
There are little cars especially for disabled people. They only go 45km per hour and they are allowed on cycle lanes and you are allowed to park them anywhere near a store or whatever, on the side walk too, so you don’t have to walk far from the car to your destination. So, I applied for such a car at the health and disability office in my city.
I cannot get a car, and if I buy one myself they will adjust it for me but take away my scooter (which I need to walk my dog and to take a stroll around the block with nice weather and such).
Well, I have no money to buy one. So I tried to get a loan. I have HIV.. I don’t work… no loan.
Then, my friends.. last week..
Rutger called me to tell me he wanted to help me out with my dream about that little car.. and he would use the money coming from selling the short films theater tickets for my little car!!!! I was floating on a cloud and no one would get me off it anymore.. no one took me off.. someone sent me a little higher after that, because then some saint in the audience offered a car, ready to be used by me!
Starfish, with the precious help and heartfelt support of Jeroen Thomas, gives me a little car to use, my friends.. no more winter nightmares about cold, fevers, pneumonias.. and I can even drive to some friends I normally cannot meet anymore unless they come to me!
My dear friend Rutger and his wonderful Starfish Association once took my hand and they haven’t let it go ever since.
I wanted all of you who might thought I had disappeared in thin air, to know that Rutger stayed in touch year in year out, came to visit me whenever he could and he followed me.. in my ups and my downs and Starfish never abandoned me. I am grateful and wanted to share with you how happy Rutger and his friends made me.
This is where donations go to, amongst other things, and this is the miracle of situations and goodness coming together.
Big kiss and when I have my little car you bet you’ll see a pic of me and my StarfishVROOOOOOOOOM!

Love, and stay safe,
DD

Mon
May 21 2001
Message: Hi Rutger, did the day start with a smile
for you? hope so! Maybe a little sunshine too,
-here it's coming and going but at least no rain.
Well, already Monday.. This was a special weekend.
Maybe it passed unnoticed for many people, but
AIDSmemorialday was 'celebrated' last Saturday.
It's been years since I joined the crowd in Amsterdam
where we all remember the ones we lost because
of hiv/aids. The performances, the speeches, the
song 'THE ROSE" sang after we are finished
and the bag pipe player ( after some ups and downs
still able to play!) who plays THE ROSE while
everyone marches- wheels or hangs on to partners,
buddy's or anyone's arms to move, to the Dam,
where the bells play the rose again, together
with the bagpipe player and then we let go white
balloons with cards attached to them, with messages.
Personal ones. It makes you shiver to the bone.
But, the most beautiful part of this all happens
still in the Beurs van Berlage ( where the Memorial
takes place), after the speeches and sometimes
songs, dances -inspired by hiv, and often performed
by 'patients' -Heck.. I don't know what theme
they had this year I just realize....-sigh..-
That most beautiful part takes place in the dark,
where we all sit in silence, and then suddenly
people start shouting, or at least they try to,
tears often make it hard to speak- the names of
those passed on. I used to shout the names too.
Started with only one, I didn't know more people.
Then I became one of the guys.. yes I know I am
a woman, but my friends were all men. I lost almost
every one of them, two less close friends are
still alive and one lives in the States. Within
4 years I had to shout all those names. 28 names.
Two women were added to that group as well.. Some
died after a long struggle, horrible therapies,
disappointment and finally defeat. HIV had won.
Some died by their own had, couldn't cope anymore.
After my last and closest friend died I became
too ill myself to go without someone to help me,
and I didn't and don't have such a person so I
use Memorial day- or better, the whole weekend
to remember them in my own way, in my own home.
I rarely take out the cards, -funeral cards often,
little things I have from them or the emails I
have saved on disks, because it's too confronting,
painful. But this weekend it was time to take
them out again. I remember one of them always
writing under his emails, "a coffin is always
less comfortable then a condom: stay safe!"...
Yes..straight forward but so right. My friend
Rem came over on Sunday and we sang the rose-
in a good version and one we tried to record on
webcam, -ha what a laugh.. cam isn't made for
that amount of sound and volume, and somehow the
image was blurry too, -no focus option on the
cam. But, we tried anyway. Some friends were able
to see it, with others it kept buffering. Doesn't
matter. The ones that know what The rose means
were glad to get it, even though a day late (
Sunday instead of Saturday), and others have a
funny impression of what the heck I am doing in
this room at the weekend hahaha Another day is
coming up soon- May 26. One I rather don't remember
but still somehow 'celebrate' it..or more.. acknowledging
it..maybe. The day I got the results of the hiv
test, after several inconclusive tests,-from which
the first result came on my birthday, the 11th..
it was a hell of a month, tested April 25th, and
5 wrong test, one screw up at the lab, a new test
and then.. Bingo. In the middle of a live broadcasting
at the studio -I was a radio host- the phone rang.
Oh well.. still 5 days to go, and decided to think
of the good things that happened in the second
half of my life, the one after I knew I have it,
and not to think too much about what was good
in the other half of my life, the time before
the test. It can be nice to wear pink glasses
and use it to look at the past, but sometimes
that's only fooling yourself which I don't do
( much) anymore. OH MY..... I've filled your gb
way too much dear RRRRR.. but besides my own sh*t,
-(latest update) now a bit spastic, hiv has eaten
some nerves in my bone marrow/spinal cord which
will progress as with for instance Multiples Sclerosis,
and not reversible, so now trying to find the
right neurological pill to make the spasms less
severe ... so nice when you sing and suddenly
your head starts to bang forward, or backwards..
tiring though ( even though it's annoying and
makes ya tired it does give.. let's say.. funny
situations.. but never thought I would get spastic.
grrr. Well, hanging around that neck of yours,
and again, sorry for filling up the book, but
needed to share. -kept this 'memorial in private'
real private, so now a few of my wolfie friends
know why I was a little more 'locked up' then
usual and didn't tell about the above as it was
'happening. had to keep it for myself till I was
'done'. MWAH.. see ya big daddy blue eyes! didi

Sun
May 13 2001
Message: hi Rutgertje, I really think I am running
out of fuel now ( no not about a car, nor wheelchair..
mean energy) As I said, I chose for fun, and knew
my body wouldn't agree with that decision so..
yep this tigger is looking like droopy now tehehe.
Just finished composing a new song with my friend
Rem, which pleased us both more then you can imagine.
Only a hey-fever throat so needed puffs and lime
with honey to produce some sound. Of course, at
the end suddenly my voice was 100%.. by that time
we both looked like zombies ( as I do now.. boooooooo..scary
aint I? hehehe) Next time we're gonna try if we
can catch some sound on my webcam.. yeh.. "studio
Sunday tunes".. the 2 of us live.. heeellllppp,
Nahh don't even know if the cam will be able to
cope with the volume and high tones, but if it
does it gives a nice impression of us, for some
friends. had a lovely b.day.. amazing how internet
can enrich your ( at least my..) life. Reckon
you're almost done there huh? Hope you've swung
your butt on the nice Brazilian tunes ( which
I LOVE.. Jazzy Brazilian.. draws ya into a rhythm
that can flip over your mood 180 degrees!!) This
Dutchy here is gonna rest now... probably will
lay half dead for a few hours. -now hope those
legs won't start again.. pain was so unbearable
last night and night before.. Hope doc 2 can give
me something soon.. otherwise.. the homeopathic
way to knock me out. ok, hangin' around your neck
as ever ( who thought I would give up on that
by now.. nooo way!) KISSSSS didi

Fri
May 11 2001
Message: Hi daddy blue eyes! What a wonderful
day it is today. Sunny, warm, finally weather
to sit outside and listen to audiobooks without
getting sick! Do you know what a wonderful bunch
of fans you have? I really need to thank all those
I even never spoke to and still thought of me
and sent me cybercards! wow.. we're gonna have
a party tonight on the net, so need to get some
extra sleep, or kip as the British call it- and
you know why that makes me giggle.. can you see
me sleeping with a kip? nahhh..( however.. I do
have a reputation of being kinky, nahh not with
a kip!!!!hahaha-sorry English speakers, kip is
chicken in Dutch) I had lots of lovely presentes
-blink blink- one of them a UFO lamp.. psychedelic
and I love it! I am SPOILED! tired as hell, 'cause
Cazzie and I have been unwrapping last night,
but a girl has to set priorities and I do know
I get a little Xtra ill when I 'over do it' a
bit but I won't ever let the pleasure slip because
of that. Birthdays are more special now, each
one becomes a victory, that feeling only started
with the last one, and this time it's even more
so. And you and the firly girlies make that victory
huge and something to remember! Uhh.. Cazziebeastsister..
coffee.. lots of black coffee..-that b.day song
has the same effect as R's singing in soldier
of orange hahahaha! And Wizzy, happy birthday
too honey!!! ..the little furball, tehee BB...YOU
GOT HIM..yep dear Rutger, it wás a clue,
even though pets do get names that often don't
fit with the sexes! -judi, good luck honey! again,
everyone, thank you for thinking of me! ok, now
I filled up the book enough. Hugs and.. hanging
around your neck and maybe a tango for my birthday
so if you get dizzy you know why! bye pooh! Didi

Tue May 08 2001
Message: Hello dear man, Sucks with those work
permits and all, -can't come to his name right
now, but some Dutch actor who was picked out by
Steven Spielberg to play in that new movie with
Tom Cruise had to leave because his work permit
wasn't arranged. Thought of you when he told about
that, and boom.. my 'fear' was in place. But so
to hear you aren't that easy to get rid of hahaha.
Wacky and weird.. yes that suits you.. teehee
Think I am in a good mood today.. tonight, when
the clock strikes 1 am and may 9 starts in the
UK our cazzie and I will celebrate her birthday
on the phone ( sorry caz, had to mention it!)
Look forward to it. must make sure I have rested
some before of course! A man from the nurses agency
has left about an hour ago. Such a relief that
he has been a buddy, so no need to explain things
about hiv/aids, just some extra info about my
handicap. Now they have to find me some nurses
who can work in a way that suits me best and it
will start. Yeah, sometimes things just work fine.
Think it was about time too! Listening to Venice
( a band from Callifornia) right now. Such a great
harmony in the songs! -gonna record some of my
own soon too, but have caught a cold so my own
voice is about a quint lower then usual and a
bit cracky.. which can be 'sexy' in some songs,
but the song that could use that hasn't been recorded
for as far as the guitar goes.. you'll see when
Rem has recorded his guitar part I sing my normal
voice again. ah well, can't have everything. (duhhh
not even half..) -Rain, was lovely to see you
too in chat. Am trying to make it more often!!
Well.. gotta write some now, so will leave your
gb papabear! Nosey, kissy tickle and wiggle, hanging
around that neck as ever! didi

Thu
May 03 2001
Message: Hi Rutger, sigh.. Please help me hanging,
I am so exhausted I will fall off! As Cazzie already
stated, my upstairs neighbour ( or at least the
man he hired) is driving me crazy. Drilling, breaking,
polishing ( with such a loud sharp noisy machine)
from 8 am till 8 pm. Can't hear myself or others
speaking, can't hear radio nor tv, can't think.
Mom's heart started to give trouble from the nerves,
I had an epileptic seizure. grrrrr Yesterday Remco,
my friend/bro was here, thought we could sing
a time extra.. yeah.. first only hammering, well
we could sing over that sound ( extra time EXTRA
loud wild monta skies.. really a leathal weapon
when we are not yet 'warm' haha) but.. no, the
guy went on. and then.. we had 'inspiration' started
composing again.. forget it. we couldn't hear
the guitar nor ourselves. If I could have made
him drill his.. ****** off.. I would. so, we did
record in hopes the mic would pick up some of
what we did- at least the guitar was recorded
straight into the recorder. Listened back; you
hear nice. . . drilling. -actually, when I hear
it I have to laugh. remco is angry but I can't
help giggling. Am bruised from the seizure now,
went back to bed but the bed is vibrating. No,
not some nice new toy, no joy no smile, no glacey
eyes, just the vibrations from the drilling that
makes my mattress turn wild. So, up again, checking
the site, checking my girls. Should start new
writing but can't concentrate.. uhh.. am writing
now, but no need to concentrate to fill up the
GB hahahahaa and then.. ULTIMATE GUESTBOOK FILLING:
because, it was, there fore, never the less, after
all, it has been and will become.. peace. sorry..
persiflage.. couldn't resist.teheheee tomorrow
may 4th.. dodenherdenking. (honoring the people
who died in WWII) .. they can't do the ceremony
as usual.. because of foot and mouth spreading.
grrrrr. Mom understands but does hurt. I feel
the same. May.. a difficult month for both mom
and me. For her the war, for her my own private
war. ok I know, filled up enough space. -what
ever you do in Brazil, I'm hanging along ( you
must feel like a kangaroo...) KISSSSSS didi

Sun
April 29 2001
Message: hey dear man, yep night owl here. Still
used to my rhythm of having to stay up at night
till 2 am for medication. No medication to take
now but can't get used to a normal night yet.
It'll come. been drooling over your picture gallery
again, and love the new ones- have them blown
up from my wolfie sisters so I could see them
better,.. so jummy.. and cute in a.. how do you
call it in English? tuinbroek..LOL but do like
you best as you are now.. ok ok and the shot in
FB with your hand in your...NECK. just talked
with my dearest furry girlie about how much female
flesh you 'must' touch for your job. I know, "just
a job"..-bet the woman need LOTS of rehersals..
hahahaaa ( or you too?? spill the beans!) ok,
bit in a silly mood. woke up after my nap this
early evening and saw the main compartinment of
my patinets-lift hanging - on the ceiling-.. still
not used to it, and also installed a new webcam
today. what did I say to mom with my sleepy head?
What is that camera doing in the middle of the
room... ahum.. duuhhhhh.. bing bong. oh btw, cazzie
sis... how I kick if I am haning on my ankles?
honey I don't hang on my ankles anymore. training
my thighs now..must be careful not to choke him!
can kick all over- not your way of course -innocent
face. and raindance, you're a doll. hey sweet
man, see ya. hanging as ever d-dee

Fri
April 20 2001
Message: Hi Sweet blue Bear, I gotta do it.. I
gotta yell hurray!! Have you heard? It was on
the news, and I am so happy: the pharmaceutical
companies had to give in.. South Africa will have
access to cheaper hiv -drugs!!! I haven't heard
the details but this is already enough to make
a few wheelies... It won't save lifes, but sure
will make it easier. And not only that, the drugs
exist so everyone should have the right to chose..
to take it or not. There is some justice.. sometimes.
Well.. sick laptop huh? If your lap is empty now..
I'm glad to fill it up till the puter is back..
No? drat! the neck it is then. Oh by the way,
when you get a tired neck at night ( UK time)
it's not me, it's cazzie. Made a deal with her,
she's got you at night, I got you during the day.
Normally one would think a man should have something
say about it.. but in this case. You don't. teeehee.
fix that puter up dear bear, love ya till end
of time -oh and hi tia, miss you too hon! byeeeeeee

Thu
March 01 2001
Message: hiya, how are you big guy? if Wendy's
right, congrats! already sailing on the big blue
sea? playing "Berend botje?" LOL. At
my end it's not real great. Besides the medical
shit, pain and other side effects, a few people
disapointed me again. wonder if that ever stops.
Promising things and don't do it. ooh I resent
it so much!! always the "oh sorry, I changed
my mind".. And I never learn, always bump
my head ( worse then a donkey!!!) Now ofcourse,
they have lots of things to do, and I don't have
anything to do except what I make myself do to
pass time ( and that's internet, cruising on your
site -which is fun but not all day!- or listening
tv/video an dsing every weekend) so, I grab such
an idea with both hand, focus on it.. But in their
busy lives it's nothing. just a thought and the
thought simply changed. too much probs because
I can't ever show up there.. pfff wonder what
they say if they can't travel anymore when they
have the same probs.-although they will always
see eachother since they all live in A.dam and
I don't. anyway, it means no new newsletter for
the positive women, no stories by me in the old
newsletter.. No groups on the internet which they
made me make but never subscribed to make it work..
grrr ha no contact at all. Maybe stupid of me
to try to restore the connections with them again.
I know they are so much different then I am, they
have normal lives, next to being hiv positive.
I don't. Never have fit in that group, but at
the same time I don't fit in a group of disabled
people either. I do fit in this little Hauerworld
though! No better support and company then the
girls here. At this very moment the wolfies are
scratching there ears and back and are moaning
while hopping their tails up and down.. why? we
are having a cub! our Pam's daughter is having
her kid FINALLY!!!! yep, cyber aunts we are probably
by now, or almost. yeehaaa hmm.. I stop now, before
my note is an earthquake on it's own. (sorry Gordon)
Love ya, miss ya, still hanging around your neck
but be aware.. I might get sea-sick if you're
rocking on the waves!!! AHOOooWO OOooWOOWOo ooWOOW
OOOOooWO ooooooo didi

Wed
February 21 2001
Message: Hi daddy blue eyes! -nice little new
additon in bytes.. two of you huh? well I'll settle
for one!!! ok ok.. a half..1/8?? It's quiet in
Hauer land, silent knight..even the gb is slow-
no offence wolfsisters and other furry and not
furry beings! I hope you're working on what you
had planned, and as crony says, that the contract
is signed! We need some action report I think..
why the heck am I writing here? ohh simple: feeling
like sh*t from the medication, have to stay out
of the living room because the floor has just
been mopped with polishing stuff ( that sure makes
nice artistic looking tire marks if I drive in
circles!!) and I have to call the hiv-neurologist
to discuss the matter of the drug that has to
go but give me a hell of a pain in the mean time.
But, glad to say your fans, my friends keep me
pleasantly crazy.. ok ok.. I'll leave the gb alone
now!! hanging around your neck!! didi AHOWOOoOWOWOWOWoooOWOWWOOWOWOWOWowoooooo

Thu
February 01 2001
Message: Hi Rutger, sorry, gotta use your gb to
thank your fans for supporting me, and writing
me all those lovely emails and cards. I'm not
fit enough to answer each letter I get ( and that's
a lot!) but I never had so many people caring
about my well being. thank you all. I feel a little
better. It's not perfect yet, but I don't have
to be in bed all the time, and the pain is a lot
less severe. most danger is out of the air too.
the medication, how risky they might be do their
job amazingly well. now only hope I can continue
taking them. tomorrow back to the hospital to
test my blood to see if my liver can hold on.
if I am in the clear now, the doc can still blow
the whistle in the next coming 4 weeks, then one
of the four meds has to go.. hope not. finding
a substitute for it will be hard. I'm not back
full mode yet wolfie friends, but prepare yourself
for my return.. this raunchy dutchgirl is slowly
heading for the den!!! thanks dear Rutger for
being there- and here or anywhere on this planet.
there should be a medicine with your name on it,
'cause that's what you are! pure medicine ( against
rutgeritis...) much love miss G, zoentjes, talk
or write to you soon!!! didi - hey daddy blue
eyes, I never let go of that neck.. think my arms
are glued to it.. - byeeeeeee AHOOWOWOOOoooooo

Thu
January 18 2001
Message: Dear rutger thank you so much for your
kind words. feels like you have your arms around
me to protect me like big daddy blue eyes ( could
use some protection now..) everyone else who supports
me and cares for me, thank you. It's not easy
to go on line and write at thsi moment. I am very
ill. HIV-meningitis. first time i had it was about
2 years ago, and it kept coming back, chronic
hiv meningitis so to speak, but medication for
as far as I can take hiv medication, was supposed
to keep it bearable. I start to get resistent
to the hiv blocker and so it's back full attack.
I try to write normal sentences, I hope I succeed..
I even talk funny. not only because of the sedation
and painkillers. tests have to be done ( on your
birthday my dear man), I seem to have brain damage
from all that time having these inflammations
in my head. chance I have had a little bleeding
caused by another hiv related illness called ITP,
but that is not sure. the tests,including cat
scans have to make clear what is going on. I hope
there is a medication to at least stop the symptoms
that are getting pretty annoing like spastic movements
in left body parts. I have to stop . the pain
is killing me. thank you again dear man. I love
ya. dear friends thankyou for suppport. I hope
to bne back soon. didi

Fri
August 31 2001
Message: Hi Rutger! as I listen to the rain, which
probably will produce a rainbow since it is sunny
at the same time I am taking my temperature. (
in my mouth of course LOL) I've had a few bad
days, with one day dangerous high fever, and lower
ones till last night. it beeps.. hold on; good!
38C, a bit of a temp but not much! During that
high fever I caught a cold. Extra anti biotics
have to prevent it from turning into a pneumonia,
but I think it's only a few very stiff muscles
and a face that feels like I'm bruised with a
black eye and jaw. Sinus infection and as usual
a few very swollen glands in my neck and face.
ah well.. I try to do some stuff, have to go back
to bed a lot because of sudden fever attacks,
or major swooshyness or real dizziness but I'll
survive! Trying to do some with those icons I
spoke about a few days back.. did make a cursor..
sweetie.. you really don't wanna know what kind
of cursor LOL (besides that.. you need a magnifying
glass and reading glasses to see it) Side effects
-pain and a general feeling of hiv-eritis as I
call symptoms known to be caused by hiv itself,
are building up, but I cope with it. only a bit
out of touch with everyone I'm affraid. - - -
Anne, very sorry to hear about your brother. I
remember when my mom had cancer, I was only a
very small child. It's awful to want to fight
against something you can't really fight in any
other way then doctors tell you.. Only thing one
can do is live, as long as you can, as long as
life is still living. hugs to you.-- Jennifer
haha you crazy girl! have fun, see you when you
are home! thanks for the message!! -- well dear
poohbear, still am a tigger without a bounce but
I'll find a way to climb up- bend over you tree
of a man..- yep I'm hanging. wo o ooo oow.. don't
run!!!! love and waves from the parental front
LOL Didi AhoowoooWO WOooWOoo WOOoooo WOooooo ooooo

Sun
August 26 2001
Message: Hi Rutger! yes you are correct, our first
talk was a year ago exact on the date! cheers!(
happy anniversary hahahaaha) so many things have
happened in that year, bad ones but so many good
ones.. and none of the good would have happened
without you, your site and the people I met on
the site. kiss for it sweet bear. Sounds interesting,
that Indian actor, and caz showed me a piccie
from Sean's site so now know a bit about whom
you are talking! long days for you.. arrghh could
tell ya not to work too hard but that's said to
deaf man's ears! It's awfully hot here, but a
thunder and rain -and the rest of what comes with
it- front is coming towards us.. it is getting
dark so I hope it really falls down on us too!
can't bear that heat. Rem and I tried to sing
but if I tried I wanted to drive back to the standing
fan and gasp air for 10 min. so we cancelled this
weekends session, just talked, yawned ( weekend
ritual here.. waking up together, or at least
try.. loooads of coffee). fed him some pie.. not
my own though. nope, that one has to be baked
in two weeks again, when my cazzietwintwit is
coming to visit me. ( yeehaa). ok Rut-oh-rut,
see ya later, hanging on my ankles again.. arms
too hot. -and someone told me to think kittens
and jellybeans today..maybe ankle hanging is a
result of that LOL hugsies, Didi

Wed
August 22 2001
Message: Dear dear Rutger, dear friends, including
the 'new' ones and anonymous ones; I am crying,
once more but this time it's from something special,
a good feeling that's for sure. -Cazzie my sister,
you told me in private that the poem was for me
and yes.. it's me. thank you love. you caught
me words like only you can. and the other poem,
from Jackie's card, so touching too- mwah! ..
all the cybercards, emails, GB messages, it's
amazing. Yes I was alone, alone inside and outside
but coming home here, and be lifted up by more
hands then I can count make me realize that I
may have lost a lot.. I will loose so much more,
but Lord what I have gained, incredible. When
I came to your site Rutger, I had no one but my
parents and my bro. Now it feels like half the
world cares, always a place to come home to..
as long as I my body and brain allow it, I will
come home. day in, day out. Some- or better said,
a lot of people ask me what can they can do to
help, (find a cure? hahaha) but dear people, you
all have no idea what you do for me. no supportgroup
I have been on has ever been so true, close, nor
has given this warmth, in laughter and in tears.
yesterday I was simply in shock.. had to face
what I knew but hadn't heard out loud in that
way, and the echo of those words, confrontation
with the final result of aids- and a nasty situation
for as far as the drugs goes, filled the emptiness
when I sat there alone with the ashtray. ... till
I hollered in this GB, and your voices filled
some of the emptiness and faded out the echo of
the words that no person wants to hear. Thank
you, everyone, I love you all.. I've babbled enough
here, mustn't fill up your space Rutger. Till
soon. AHooWOWOO ooWOOWOo oooo OOoooo Didi

Mon
August 20 2001
Message: hi Rutmans, hmm I should be laying down
now, but mom has a diabetic sugar dip so gotta
wait till she is ok again, then I can lay down.
and I need it! gosh I've had a bad night, got
the spasms ( quite bad) in chat,-which meant no
hands to chat with.. went better after an hour,
then it came back in the early morning, right
after one of our 5 cats had been stuck under the
mechanical foot/leg supporter from my mom's chair
( and we both didn't know why the chair was making
such a strange noise.. till she made the foot/leg
supporter come up again and yup.. the cat came
out from under it.. poor thing, caught in a chair..
but Keessie didn't mow, he just ran like hell
to escape to the garden, not hurt.. or he was
in shock he he he!!! Rem has been here instead
of this weekend and we had a very good, intensive
talk ( takes lots of energy as well.. pff more
then I thought) and just sang a little but not
too much since I wasn't feeling too healthy..
duuuh how would that come huh? And now.. I really
have to tell you that you've made a mistake with
the pictures in the gallery.. how sweet they may
be, you accidentally chose the wrong pic -the
one from 1969-.. you should know that I, bounceless
tigger didn't exist till a year later, and how
adorable that mini tiger on your uuhmm.. let's
say.. lap, is.. it should have been a pic of extra
large Tigger, the big CAT ( me) there.. same postion,
or any other for that matter.. as long as you
give tigger the same look at that kittycat.. teeheheee
beardyman is lovely,-tickle tickle- and 'now bear'
is the very very very best -no I do not stutter!
But really, it's so nice you also went purple..
(oops.. background I mean).. say it yourself :
looks much better then sea-green.. and much more
important: it fits my screen colours so perfectly!
and of course that is what counts huh! duuuuuh.
oh btw, EVA: the word you were looking for is
moppie, more used for women though.. but yeh..
he's a sort of moppie.. I'll stick to 'scheet'
.. and that means fart but in Dutch that is used
as a pet name too! hahahhaa ok.. now nursey and
eva are walking with mills and probably Rutger
as well if I go on.. woops, there's mom.. got
some colour back on her cheeks ( face!) and doesn't
shake anymore, means I can SLEEP.. which I need!
gotta see the doc tomorrow so wish me luck ol'
bear.. I will keep on hanging when I have to go
to his 'room'..not THE room alas, so sorry..you'll be pulled along for support! give you a neck massage
later if I've pulled too hard love, AHoooOO WOOOWoo
OOOoooooOO oOOoo Didi

Mon
August 13 2001
Message: Ooooh... ahhh.. uuuuhh.. What a delight
to have a magnifying option in my new wireless
mouse.. I think I will stay on the guestbook page
for as long as I can.. Now I imagine a marble
floor under you instead of sand.. double ooooh..
Tehehehee what can I say? (besides ohhh)Nah, without
kidding, lovely new piks OOPS..pics on the site
dear papabear. After my museum story I have something
new to 'feel' huh? If only computers could be
in relief..- they do have puters that give smell,
thought in Japan.. order flowers and test the
smell of the roses you ordered. really! not kidding!
but.. till we have relief puters, bare bear would
be a good test object.. I know.. undress my teddy
and I have one.. duuuh. Must say, even though
I love the piccy behind the menu ( after I enlarged
it) the colour behind it clashes with my screen
colours.. of course those are all pink and purple
-what else when you are in a purple palace as
good as every day.. LOL but maybe it'll come in
fashion one day.. lilac with sea green. My nurse
-no not Renee#2, my real nurse heard about what's
up with me, she is back from vacation and plan
was she would be here tomorrow but she already
dropped by to check me for bruises. this time
she wrote the report to doc B ( by email). a few
more things to say then I wrote him last friday..
which made him ask me if I didn't want to come
over and start the new stuff, but my other doc
isn't there and I would have to begin with a new
doc and I have my belly full of temp. docs.. nope
I wait. only more nosebleedings and more spicks
of blood through my skin on more places. Only
one week I will manage that! watch me! hey sweetie,
don't work too hard in that damn heat. Hugsies
and love ya, I keep on hanging but I do need a
towel between us, way to hot to stick to your
skin! LOL -thanks webmasters for all treats! cuwhenIcu
AhoOW oOWOoO WOWoO WWO OWOW OOWOWOoooWOO OWOOW
OWOoo(GASP..!) wo oo ooo o

Mon
August 13 2001
Message: Hi rutger!- yes it is late but I just
came out of bed after a long nap.. Rem was here
today, not that I did too much but anything is
a too much at the moment. But I won't stop singing,
no matter what.. I have even sang when I had that
pneumonia, even though you had to use a hearing
aid to hear me..think I only breathed heavily
in rhythm.. but anyway, that was then, now is
now.. now I shake in rhythm if I am not careful.
This time only one shaky hour.. Rem stopped singing
right away, so we went on hugging ( now that is
a nice treat, even though hugging a bro is not
the same as hugging a... darn.. wonder how those
wolfsisters of mine come to think of me when they
see a statuette of a naked man? I don't give them
any reason to think of me that way do I? DUUUUUHHHHH)
So, I am supposed to teach you to massage in Braille
huh? ok.. if I can read you you can read me LOL
Now that statuette the ladies spoke about made
me think of that summer of 1984.. I just had to
face that I wouldn't see normally anymore. I wasn't
blind but as now, only saw blurs -and couldn't
make anything out of them since I wasn't used
to it as I am now. In my training period to learn
to see by touch and hearing my parents took me
to the "tropen museum' in Amsterdam. there
was an exhibit of Indonesian and Papua art ( and
a rebuild of a few houses like my father has lived
in on the army base in Jakarta in his childhood)
anyway. mom brought me to some statuettes, you
know.. the wellknown male figures.. with huge
cocks as a symbol of virtility ( sp) but it was
a bit high and not much light in that isle so
she told me feel. I was allowed to touch it, -she
had asked- and she wanted me to tell what I 'saw',
including little ornaments and such. She didn't
tell me it was a huge dick I would be going to
touch.. I started with the head. Now you must
realize I was just 14!!! I came lower, chest,
arms, then.. jabba jabba jabba.. Now at the moment
I started to feel something 'strange.. which I
still didn't think of as a body part, 'cause I
thought it was some tool ( yeh... different tool)
or a weapon, two older ladies came from behind
another table with statuettes. behind an original
totem they kept still, and I heard one woman say
"Oh my, look that, what a pervert! she is
giving that doll a handjob!" but then in
the most pure Amsterdam accent you can imagine,
clearly from the Jordaan! the moment I heard that
I understood what I was feeling and took my hands
off, of course blamed mom, who almost was wetting
her pants and dad saying I had to give it a kiss
too hahahaha -sigh.. now I am even telling ya
the imbarresing stories of my youth.. Ah well,
as a daddy blue yes you aught to know LOL Dear
Wolfiesisters.. thank you for uhhm, thinking of
me ( not sure I should be thanking ya though..tehehehe)
and dear Man of men, LOVE YA dd

Sat
August 11 2001
Message: Hi Daddy blue, what a lot of updates,
thanks- also to the webmaster!!- again a step
into that black hole called film production..
I would go completely insane with all that insecurity!
( here,.. a hanky for that cold..) At least you
have computer access, a little bit of home in
cyberspace. And me, well, everytime I have another
nosebleeding I swoosh like crazy, but glad at
least the clots come out.. better then staying
in, knowing it comes from little bleeding behind
the eyes -amongst other small veins. but, surely
gonna ask for a photo when I see doc B, can't
have more eye damage then I already have. I feel
lousy, fevers, and generally ill.. in a way I
can't wait to start my drugs again, but a bit
scared to begin with the new drug that has to
be added to the left over's. ah well.. another
week. In the mean time I come out of bed for chat-
and boy did we have fun! Pam's journey to her
new home was celebrated in.. a mud. Yep, we had
a mud wrestle contest! I know.. we are crazy,
and we are glad to be! you need some imagination
in that purple palace of yours but that's no prob
for us wolfies. Hey sweets, see ya soon, big kiss
and I'm hangin as ever.. boy is it hot.. buy a
fan on a cap LOL ( as I said.. lot of imagination
hahaha) PS: DENISE, it doesn't happen a lot that
I read a story from begin to the end. With yours
I did. I am sorry that your dad made your life
so miserable, no one should be hurt by a parent,
or by anyone for that matter. Standing up to him
has been a milestone in your life, and I thank
you for sharing it. I am glad I have never been
beaten by my father. I may not really connect
with him, but he is the most gentle father one
could wish for. How ever, child abuse was and
is a part of my life since it is a huge part of
my mother's life, she is 68 and it still shows
in some things she does, or how she does it. You
are able to write it down in a way I admire. My
own painful years ( not by a parent but by caretakers)
never came out on paper. I think I simply don't
have the guts to confrot myself with it. hahaha
as you see... you touched some people here! hugs
didi ( PPS: Rutger.. please.. don't collapse on
ANY floor while I am hanging.. I bruise too easily
at the moment!! KISSSS)

Mon
August 06 2001
Message: Pssssst... Ruuuuuutger... (......) HIYA!
ooops..did I scare ya? pffft, as if I could. woke
up with a real bad head. then the daily inspection
of my body since my thrombocites are way down.
I had to decide whether to call doc B or not.
It's kind of interesting, blood spicks through
the skin.. but, after an hour or 2 I decided not
to call in. not yet. It's only one shoulder and
a spot on my arm and it is not growing, and not
touchable blood, only showing so I have reported
it by email ( very handy to have email contact
with the doc/nurses!), will check it 3 times a
day, and will call them if it spreads but for
now this is just as minor as the little nose bleedings.
I simply gotta hold on till the 21st.. Of course
emergency is another case but for now.. The computer,
the wolfies and you keep me busy and insane so
that's ok. Have sang a bit yesterday, it's too
exhausting at the moment though. I was shaking
after the 3rd song.- now that's ok with a dramatic
song.. give it more credibility..duhh but with
an uptempo song..no. Rem, my bro was over- concerned.
if he could he would wrap me in cotton wool and
keep me in bed. Now a man who wants to keep me
in bed is fine.. but not my friend/bro Rem!!!
hahahaha ( too young.. 25!). He came in at 1pm,
to wake up at my place (gay pride/canal parade
meant a day and a night partying for him..) and
started to inspect my head. I had no idea what
he wanted.. guess what? he had read here about
my grey hairs!!! almost jumped around like repelsteeltje
(trans in Eng.. no idea, it's a fairytale character)
and called me an old broad! NAH! teehehehe. Well..
I gotta go. Dad wants to pump me up. -uuuhmm I
mean my tyres!!! All four of them almost are a
few days away from being flat.. so I need some
air ( Deb, can I hire you? haha sorry!) well dear
Rutababe, see ya later, I'm hanging, -with my
head against a shoulder I reckon.. headaches need
broad shoulder to rest on!..or chests.. or tummy's..or
as in my case.. just my pillow in 30 min. love
didi

Wed
August 01 2001
Message: Hi Rut-o-bear, what a lovely byte to
bite in! And big pics so with some effort I could
even see some! So, in those 6 months the package
learned to speak huh? teeehehee funny writing
on it! Hope you still like the tape. ( can assure
ya, wasn't easy to mix down!) Well, after seeing
doc B yesterday I'm pretty tired. Glad he's back
though. Not that much has changed but at least
some humanity and effort to find out if any treatment
would help in emergency, and that's more then
what the other bonehead did. But, swooshy I will
be for a while.. Neurologist doesn't have time
till the end of the month. will see if doc B can
speed that up though. have to call him tomorrow
anyway. Well nothing else to tell really, -besides
that I am still feeling old now doc B noticed
I have loads of grey hairs in my pitblack fur..
grrr.. but besides that, just waving- oh and also
waving to Spooky, girl long time no see! you've
got some catching up to do LOL Now, between packing,
just sit down man, I may be used hanging around
your neck, but I want to lay my head down too
so SIT. You might catch a hug or two but just
bite your teeth.. you'll survive LOL love you
to bits, bytes and pieces, Didi

Fri
July 27 2001
Message: Hi rutgerohohoh, are you melting away
too? I am! darn, if not from fever I melt away
from the weather LOL Yesterday a high fever that
didn't drop till 7pm. before that I had been sleeping
but talked nonsense too, hallucinated from fever.
Fam. doc said just give some paracetamol, not
much you can do with fever. If it stays on without
a break for a few days you have to call the hospital.
well, paracetamol.. I think I can pee paracetamol
by now so that really didn't help. Finally mom
decided to give me some quinine.. not the safest
stuff but at least it helped together with the
ice packings. Managed to celebrate Crony's birthday
in pp too-we had to leave your wonderful palace
though.. it's not working real great lately..
freezes like crazy and then runs over the screen,
people fall out which doesn't happen in our own
little room. not related to how many people there
are though, can happen with 2 in the room, 6 in
the room etc. (we know it happens with around
9 but this is ..ok ok you're no computer wizard
-but mr C is !!!LOL) anyway, woke up with only
a light fever so I try to do something. swooshing
still going on, but soon very soon I might hear
what is causing this 'episode'. poor doc B.. comes
back and finds this shit going on! oh uhh.. you
noticed I worked myself in a bit of a.. position
here with Renee#2 and -who was it.. Sarah?- the
woman who writes the L.U. L.. lets see if I can
explain it with some decency LOL.. Girls, LUL
is a the most rude word for that specific male
body part, also used a LOT for calling names..
so I REALLY wonder what it in shorthand! ( only
thing I can think of is love U lots..) arrghh
me and my Dutch lessons.. And sweet bear, whaddaya
think of caz's visualisation? knowing you you
start swimming and I tell ya.. I can't! I'd be
screaming my lungs out. uhhm next stop forest?
LOVE YA -need another break (yep.. still writing
with breaks..sigh) I'm hanging.. kiss didi

Mon
July 23 2001
Message: Hi lord of the book, I sure like the
tone and the laughter in the GB last few days.
Hear hear for the wolfies!- and our alpha male.
Yep, this bouncless tigger is sitting behind the
pc again ( logical.. can't sit ON it..) Sunday,
in my singing session I took ill, very high fever
-41C, went up and down but never lower then 39C
so my mom of mom's put me in bed. Remco, my friend/substitute
bro and guitarist just sat with me, played me
my favourite song and the lullaby he wrote for
me ( yes mushy but lovely) and I fell a sleep.
Last night, late chat, but had slept for a long
time so figured I had to be able ( was the b.
day-party of our Sue! never miss a party with
cyber booze!) But when I logged off I was quite
sick, fever never went.. yep a hot girls here
-no no don't you say it girls.. DOWN..tehhee.
those inflammations, infections etc since the
drugs have been taken away really start to get
more aggressive. scary. My head. I'm afraid for
my head. grr. the spasms are worse too, so the
virus in my spinal cord must be worse. glad the
site, my mail, and making a pressie for our crony
deb gives some distraction. Wish it was weekend
already, ( ha that on Monday.. LOL) no matter
how I feel, singing is freedom for me. I know
that we have had new pics no too long ago, but
can't help looking out for new ones- best ones
are recent ones! hint hint ( no teefnurseyRenee,
I won't mention bear middle pics! ) Well.. gotta
log off again. expensive way of connecting with
my favourite world, -pff nothing else I spoil
myself with so what the heck?!- and read my twintwit's
new piece on our Mac2.. then a nap.. sure thing.
hey.. bow over my dear bear. Need that neck. I'll
transform in a little didi ( shrink shrink triple
shrink) just to be able to have a good neck-seat..
until I've got my bounce back.. bye, Didi, ( bounceless
tigger)

Thu
July 12 2001
Message: Hi daddy blue eyes, ..focussing on my
happycandle to get some sanity in my chaotic mind
today ( sanity.. yuk..).. this is what I ended
up with. // sometimes, I feel like a computer,
hooked up on the internet; never knowing when
I lose connection, never knowing what virus will
wonder around to get me down, or how I can protect
others from getting infected with the one already
there... Only I cannot reboot myself, or delete
the source of infection or replace less functional
parts, either hardware of software on this type
of computer I am. Wouldn't it be nice if I could
just upgrade myself, try different software, so
I could see if my friends are compatible with
the didi2001... Then again, I don't need it; my
friends proved to be compatible with any type
of didi.. they work with the didi1970 and make
it feel as if it will beat all future versions
and upgrades.. Ok, it does crash every now and
then, it's not as fast as we'd like it to be,
but they keep this puter running, and sometimes
they're substitutes for the parts, software and
upgrades I miss. And one external harddrive is
travelling over the planet.. Love didi

Wed
July 04 2001
Message: haideho Rutger, hm, at least there is
some wind here now, but eastwind so sneeze away
miss hayfever..I sure hope the rain that they
forecast for the end of the week will actually
come down. Glad to say my lungs are doing much
better, only need some time to recover. -maybe
my neighbours are happy the way it is.. can only
sing one song and then I already lose volume and
after a second song I can't sing anymore, and
hyperventilate LOL Just had a strange thing on
my aol-IM.. I was haled by a stranger, which is
funny on it's own, since I am not in the public
list- but servers do screw up from time to time
so it can happen. He obviously took me for someone
else and said "hey sugar it's Richard. Honey
you have such a gorgeous body.." I didn't
know the guy but sure thought "go on.. don't
stop.." teheehehehe poor guy if he only had
seen me sitting in my PJ's hair to all direction
except the right one and lots of body but not
inch is gorgeous LOLOLOLOL of course I hit the
block button! Think I'm gonna sit in the garden
every now and then with a nice book on my head.
-scare the neighbours away with my looks, -no
energy for the bathroom yet. My nurse would come
today but I asked her to come over tomorrow so
let's say I have a bad hair day, but I'm ok with
it. hmm a bad hair day by choice.. oh before I
forget, Sarah Murray and Suzanne, I know, you
rather have an answer from the man himself ( I've
already heard several people suggest a bite with
him saying it.. -dream on-) but yes, the G in
Rutger's name is the throat clearing sound. ok,
happy 4th American wolfies and friends, I'm gonna
catch some air outside ( oh R- and Dutch wolfies-,
I heard something funny on the Belgium news. was
an item about nudists, the first nudist beach
there, and the man who read the news called them
"blote zonnekloppers" tehehehee (translated:
naked sun knockers, but sounds real funny in Dutch
which is almost the same as Belgium). ok ok I'll
leave I'll leave. I'm hanging around your neck
dear bear, -with this heat probably a half bare
bear LOL Sloppy kisses! didi

Mon
June 04 2001
Message: Hi Rutger, diaries, diaries.. -an my
name isn't even Bridget Jones!- as if I have nothing
better to do then keeping up my schedule/diary
(hanging around a certain fellow's neck for instance
would be a nicer way to spend the day.. -what
fellow, what neck..where.. who..how..-yes ok..
babbling didi here, who must have a T obsession
by now.. T-cells, can only hold T at the moment,
T-mail, and giggle with a T, look: Teehehehehe,
and if crying would start with a T, I would add
it to the list but then it would by trying.. which
I also do.. a LOT..(both crying and trying, althought
don't have to try to cry -which I also do a LOT
from laughter by the way!) ok..this a strange
line.. I am strange.. sometimes you are too Mr,
so we make a good pair hahahaa). . Written down
some fun dates in the diary: -visits from special
friends, and some dates for hospital stuff.. and
then having to scratch those last ones again 'cause
they are cancelled.. -better write them down with
pencil next time.. easier to erase. that schedule
of yours is 100 times more chaotic and complex
I know.. but still. Have email contact with the
hospital too, -at least, ergo therapist and the
aids consulent let me do it by email, less of
a strain then going up there every time for little
things. can be very handy- for any close but far
away contact email is a wonderful thing, friend
or business or in between, it's handy I must say..
unless you don't know if the other party got the
message.. ah, drat, but that's the inconvenience
of cyberlife I suppose. -double drat- make it
triple!- well.. sorry for this weird message in
the middle of the night. hugs and trying to hang
around that neck of yours.. but..what's this..
did you put crème on your neck??.I feel
like I'm ...slipping... helllp..OUCH...!!Now you
see.. fallen flat on my face!!!!!!! didi

Sat
June 02 2001
Message: Hi Rutger, everyone, Needed to light,
not only a candle in my room, but also here in
the book. what for you might ask? Nksosi Johnson,
the little boy who spoke so bravely about the
acceptance of people with aids in SouthAfrica,
and who gave aids a 'face' over there.. the boy
who made me cry, made me proud.. has died. Today..
or actually, yesterday since it is late now and
I am just out of bed to have a short goss with
my cazsis.. -friday june 1. a sad day.. he made
it longe then doctors expected but still.. Nkosi..
a little great man.. goodbye.. didi

Sat
October 20 2001
Message: everyone, thanks for your sweet words
and support, and those who have had prednisone,
your words are of much use to me. I know the doctors
can tell me a lot but the more info Ihave from
people who took it the more I will be able to
or prepare myself or decide not to if they say
the changes of working is not huge. I have had
a very light dosage longer time ago when my immune
system was stronger and had some side effect but
one of my docs said I am quite weak now.. and
I really have to idea how it is to have a high
dosage by IV.. so any info- by email please is
welcome! MWAH Oh and TORI, no I don't need a transplant
hon, they will have to see if my bloodplatelets
are made too slow or in a damaged way there, and
secundary they will look if there is a leukemia-
but the high count of white bloodcells can be
something else too. so main reason is to see if
prednisone would help me get some bloodplatelets
back- lets say.. stretch time before I bleed to
death. tough stuff going on but hey.. as long
as I can smile, it's 'ok'! love you all! MWAH
dd

Fri
October 19 2001
Message: Hi Rutman- IF you read the gb that is..
I didn't for days.. Often the tone here isn't
very inviting huh LOL Some of my sweet friends
( HI JEN!) wondered where the heck I am, and started
a search- through caz or YOOHOOO's where are you?
in my mail box.. well, As most of the ones close
to me will know, I am not doing too well, and
I have things on my mind that I have to arrange,
get ready to be able to live without that bit
of worry, so didn't really have a head or time
to correspond. I can only be up a few hours in
the morning, and then wake up in the evening to
sit a bit and then chat till I ( sometimes) literally
drop down. so, if I have to do something, I gotta
do it in the times I am well enough.. kinda like
choosing between doing this or that.. chat with
my dear holly in the morning or take a shower
( hahaha yes.. even stay half stinky for a friend..
good she is at the other side of the planet hehehhee-
and my parents sit with menthol under their noses..heheheh
neh of course I wash up LOL only no shower, too
straining to do both..duuh pathetic huh!) Last
Tuesday I had an appointment with my doc, but
that darn taxi wasn't able to bring me.. of course
they keep saying they couldn't help it, but it's
the 3rd time now. Complaints at the health insurance
comp. don't seem to help grrr -gonna ask my doc
if they can arrange different transport, they
are not fit to drive me when I am ill anyway.
Of course I didn't let my appointment slip, just
called- not the usual way but told my doc it doesn't
matter if he gets paid for seeing me those 20
min or talk to me on the phone.. well he did.
Wasn't much good what came out ( and that lead
to this period of sort of absence in the book
and mail) and heavy decisions have been made.
at least, sometimes you think you have to make
a decision all by yourself, you think that is
worst, because you have to do it all alone, and
then you get to hear you don't even have to back
your reasons up because the doc thinks the same..
the decision is almost made for you by nature..
and then you realise you rather had it the other
way.. then at least you had a choice. In two weeks
I will know if we really will go on with a bone
marrow biopsy- ouch..- and the idea was using
prednisone ( already an elephant then I would
be a mountain and not the one Pammy wants to climb...)
but, just spoke with my hiv neurologist who is
against it- not the biopsy, he wants to know the results too but the prednisone.. probably too
weak to handle the side effects.. arrrghh don't
know yet what will be decided. partially by me,
partially by nature again- result of the biopsy.
ah well, enough about this, at least some know
now what is goin on, even though it may sound
a bit like a riddle to some. time for more crazy
stuff, laughter, ..I wish gb was a bit more a
happy place like before.. chewing on and on about
things happend is only wasting energy.. time.
I've learned that by now. And answering those
chew ups even so ( uuhmm would mean I am wasting
energy now as well LOLOLOL) I hope I will be able
to drink a cup of coffee in the coffee corner
in our community center again next week, 5 min
away..at least not at home, but close enough to
walk -if there is someone to push the chair that
is.. hehehee cub do you read me? probably not
LOL nothing special but all we have here..my nurse
told them I might be there a bit more, her number
left there in case I am there with someone other
then herself.. yes I have a wonderful nursey,
no sissy but heck..am I? NOPE. Hey, smile everyone,
and for who can't, here.. a cyber hug: HUG. hey
Rutbear, you're gonna need a buggy to carry me
if I have to go on prednisone LOL till then, stretch
that fatherly neck and lift me up.. I know, it's
tough for a bear.. C'est la vie,- C'est la sida
.. MWAH love Dee

Sat
October 13 2001
Message: Magnolia's, size of twice my hand, pale
pink with here and there a touch of a more intense
shade of pink.. those magnolia's, with a soothing
fresh scent grow in a park with a low, old fashioned
curled iron fence around it. I don't know where
it was, nor how large the park was- it could have
been someone's garden.. I didn't see more then
the huge flowers, and the rain of magnolia leafs
every now and then. You Rutger, had brought me
there, didn't say a word just wanted to show me
something, and the moment I saw the flowers and
touched them, I looked up, over my shoulder..just
to see you step over the fence, away from me.
Within a few seconds I wasn't me, the adult Dee,
but little Daisy, ( as I was called at that age)
I think 6 years old, including the little piggy
tails on each side of my head, white dress. The
adult me looked at her, second place now, the
child I am looking for, for a long time was dominating.
As I, Daisy was in total awe of those magnificent
flowers, I saw you watching me, gentle as always,
fatherly as often..you had delivered me it seemed.
Just watching, observing and smiling. It felt
like letting go, and where I was I was safe, and
obviously happy. Time not place were relevant
where I was.. but behind that fence where you
were life must have went on.. I held the flowers
from one twine-like branch up- still hardly up
for you, as little as I was at that age, and standing
on my toes I wanted to show you my new treasure..
you smiled once more..I know you put your cap
on and turned around, but that was Dee knowing,
Daisy didn't.. Daisy knew you would always see,
always know, without her realising she knew..
she was brought where Dee couldn't bring her..Letting
go is finding something precious too and realising
that I woke up. still smelling the magnolia's.
A wonderful place to go to, a wonderful place
to visit from time to time when things get tough.
A wonderful friend to bring me there.. so that
was my dream.. Love, Didi

Sat
October 13 2001
Message: Mawning Rut, I Know, it is late, way
too late but pain keep one awake.-both arthritis
and damn neuropathy, and added to that the spasms
and muscle cramps! GRRR New pills to ease the
spasms and maybe get me some decent sleep don't
work ( yet!) have to find the right dosage combined
with my anti epileptics, which all works a bit
in the same field so result is a bit reduced.
Well, no signs of anything good nor bad from it
so since I have to find my own dosage, only been
given the top limit, since it will work different
with my current drug combination I will increase
the night dosage. maybe it will work.. maybe I
will sleep ( ha if I really have slept a night
you will hear it here with horns and bugles, flags
and trumpets LOL) Oh btw, best way to reach friends
is often this GB, and some have difficulties getting
through in my mail, hotmail especially but even
my normal planet address is behaving odd, so,
a new addie: didi_thirdaddie@lycos.com just in
case!. I was just waving cub les off to bed, said
would go too.. duuh. sigh... no grumble though,
nope won't grumble. do that once in a while and
that is more then enough. have to do things..
so many things but so few hours in the day I am
well enough to do something. gotta have it from
mornings but those are so easily taken by other
things.. nurse coming to shower, refilling medicine
cabinet, do some financial business for parents,
take care of the financial stuff between my nurses
agency and myself, pff.. gone, in a sigh, in a
blink of an eye it is gone, and then too tired
to do things that need concentration. yeh.. light
stuff, bit email, bit tv.. or a bit nothing. so,
tomorrow morning is scheduled for what I and only
I wanted to do, no things I have to! blah! no
nurse, no medicines no financial stuff. have one
day extra, rem won't be here Sunday so.. extra
day to do what I want.. no correction, try to
do what I want. better stop making a list of what
I want to do I realize, because I always am behind,
way behind..pfff Now my twintwit C thinks "YOU
SHOULD GO TO BED"..yes Cazzie.. will do..
in which room? really fancy a stay in the bear's
head- I mean hanging around the neck is great,
leaning ON the head is great but now bunking IN
it.. wow.. ok ok too literallyLOL but the hotel..
daft boss you have.. if you can stay at the bear's
you STAY at the bear's! yep.. those 3 rooms will
be shared with joy -uhhm.. dunno about bear he
will be exhausted.. counting fingers "been
2 times in room 1, 3 times in 3 ..what did I do
in 2.. she knocked me out..where do I hide?"
no place to hide bear.. all other rooms are stuffed
with the rest the ladies, the male gb visitors
might even be at the desk.. LOL ok.. I am babbling
and now I stop babbling. going to take that extra
pill 'cause this is leading to nothing. MWAH didi

Sun
October 07 2001
Message: Hi there Rut the absent one, Sunday again,
with typical Sunday weather- meaning, drizzle
every now and then but momentarily a sort of sunny.
-still longing for thunder and the whole kaboom,
love to sit with a mug of tea, or even have some
cookies or pie in the oven.. not that I can eat
it but it smells so darn good, and always nice
to stuff someone else's face! In about 15 min
Rem will arrive, lets hope I won't have to give
up too soon, we want to do another song today..ah
well, as long as the guitar is on one track we
can do the voices later, any time I please- lets
say in the middle of the night to annoy the neighbours
hehehe. Been a bit of a bad girl, didn't look
at gb for a few days, and not worth much in correspondence
either- just every now and then a load then nothing
( so my other friends, that's the reason I am
out of touch a bit) but, thought lets wave now!
Ah there's rem, gotta go -darn he is early! hehehe
good bro, knows the earlier the better, more chance
of energy! see ya later, hugsies and Rutger, don't
throw me off your neck if I am making smacking
sounds.. can't help it, Jen sent me all the red
jellybeans and rainbows.. and while I watch the
rainbows ( aren't they gorgeous?!) I chew the
jellybeans- kinda illegal.. took them from her
son hahaha want one? KISSS love to all, DD PS-RRRR
it's obviously feeding time in here... any spare
thoughts to share? ok, now you may hit me!

Tue
September 25 2001
Message: HI rutbear, miss swooshhead here. am
I moping a bit? yep you bet I am. I know I am
strong most of the time, but sometimes I would
want to scream, -which I do actually.. hahaha
poor neighbours upstairs when I suddenly started
singing I want to break free so loudly from all
aggression I put in it. But on the other hand..
pay back time for all the drilling and hammering
this summer ( and they are still not completely
done.. she must think she lives in het Loo -no
British friends, not the loo, the Loo is the royal
palace here) So, off to bed with this pale bumblebee,
but first- eva, I think the Nostradamus topic
has been on before, I personally don't care whether
he was right or not. No use if you recognize it
after the dead is done. of course you can protect
yourself, I doubt if you have to accept things
because they are predicted, but whatever he said
is so damn complicated that no one knows for sure
what he meant. you can recognize it, as I said,
after the fact. and not all came through if I
am not mistaking. anyway.. girl, how do you come
to those things.. ol'McDonalds.. hehehe yes our
animals make different sounds too. your and my
cow are the same, only written differently. we
say boe, which is boo as for your. Our rooster,
kukeleku. our pig says knor, English pigs say
oink I think- now this is starting to become a
pathetic entry huh bear.. wonder what a rutger
bear says .. SHUT UP I reckon LOLOLOL ok, leaving.
I think I turn around again, hanging on my ankles..
belly and middle adorers, watch out, here I come;
wooopieeee. ( American flag's between my teeth
but think I need a white one between those middle-adorers!!)
MWAH, hugs and the rest of the mushy vocabulary!
Didi AHoWOOWOo WOOWOoo WOoooo

Fri
September 21 2001
Message: Hi rutger, my nurse Lettie just left,
she's doing more and more to make things easier
for me, even managed to find something to ease
the pain in my mouth, while docB says there's
nothing that helps. that woman is a gem! I had
to roar at the pharmacist this morning.. What
they've done is really too stupid for words; DocB
had given me a presription for my liquid hiv drugs,
at least one of two, since I already had a lot
of bottles from one of them. So, I needed my pills,
and the other liquid stuff. Dad had picked up
the bag with drugs, but this morning my nurse
and I looked in the fridge to get the two drugs
out (filling little bottles so I have my dosage
ready right away) I only had loads of one, none
of the other! So, I called the pharmacist. What
do you think she said? They had looked at the
prescription, did see the pills and the -now missing-
liquid hiv drugs, but they ASSUMED the doc had
made a mistake and so they gave me another load
of the one I didn't need now!!! ASSUMED! I told
her it is dangerous to ASSUME something when it's
about these drugs- any drugs but these type of
drugs even more. I only have a dosage for today,
so I told her I need those missing bottles right
away. Nope, they had to order it, would be monday.
I said I can't miss a whole weekend of hiv drugs!!
She answered that it was just a little mistake,
and she couldn't help that it would be monday.
I roared that I don't allow her to fuck with my
life, and would fill in an official complaint
against them ( ha don't even know where I should
do that, but it sounded brave!- and serious) Suddenly
the pharmacist herself came on the phone, appologized
and said I will have my bottles today, after 4pm.
-now they didn't have to order huh?!- I told her
I expect to get what is on my prescription, no
matter if the doctor prescribes shit, they don't
have to think, and if they don't trust it they
can call the doctor or me, but never ever ASSUME
I have to get something else then the doctor prescribes!!
well, another few appologies and she even agreed
with what I said. Lettie, my nurse came to me
and stuck her thumb in the air LOL at least I
used my big mouth for something good this time
hehehehe -no hic-. Well, gotta go now.. scan again.
slow puter but one day the pics will be in files
LOL ( 2006?) -Jackie, HUG.. hope nothing is wrong,
that you feel the pain because of something harmless.
and the fear for you family.. can't even begin to imagine how you- and a whole lot of other Americans-
must feel. again, HUG is all I can do.- ok papa
bear, see ya later.. you mind me hugging while
I am hanging? in a hugging mood I suppose..love,
didi ( ahoowoooo woooo wooooo)

Tue
September 18 2001
Message: HI rutbear, -just back from the hospital
a few hours ago, recovered from a huge dip from
exhaustion from that ride, being up early etc
etc, and as good as ready to take a nap/kip. -Paulette,
I am repeating words already said, but they are
right, you are never alone, and I too thank you
for sharing your soul and emotions with us. Yes,
you probably will find them back one day as reminders
of who you are, or can be at times like this,
and they will make you nod, maybe cry. the journals
are precious sweetie, for you, for us.. for those
who will read back in the GB one day, to see what
has been written through time. And that goes for
everything that has been written this last week..
Amazing how a guestbook became a sort of community,
and a place to sign in to let others know you
are ok, not ok, in pain, in joy.. I know, it was
never meant to become a place like this, but I
am darn happy it did. I hope you keep the GB from
this last week somewhere in hardcopy, safe.. it's
a reflection of souls, souls that sometimes rarely
open up..souls touching eachother, embracing in
time of need. Beauty, pure beauty as you are R..
and I don't ( only) mean the outside..it's your
inside. amazing and yet it is not, that from all
sites on the web, YOUR site became like this.
birds of a feather.. do I have to say more? HUGS
Didi

Mon
September 17 2001
Message: Hi Rutger yes, late I know, but I am
in and out of bed all the time, I'm not ok, not
by a long shot but at least I know why, and for
what reason I kind of called this out on myself;
my unforgetable week with my twintwit cazzie.
it was her holiday but can't help seeing at as
my holiday as well. I mean, I went OUT! ( stupid
huh, I am proud of myself! ) so, just taking it
easy, rest up, make sure I take my anti biotics
and not at the least my hiv drugs-left overs and
look back on this delight of a woman near me,
touchable ( giggleble and *hicable* -didi words
LOL) when I am sick to the stomach from exhaustion
and even faint. SHE is worth it. believe me. -Fiona,
read your story. Yes Caz is right, it does something
for me. I recognize a lot, could have been my
bro Rem and me, and at the same time a setting
from the past, a love from the past who in my
case eventually lead to this unhealthy present
of mine. My bro and I have a song for a few of
our worst periods, which made us as friends and
adopted bro and sis stronger, and we know we will
have a last song.. I hope he will find comfort
in it as you find in 'life'. woops, late now,
hurry my ass into PP before our Italian G is standing
at my door..must be awake! LOLOLOL ( and preferably
at least my hair sorted out and some clothes on..hehehe
* hic*) I really need to show her a very nice
candle I have from my twintwit... not one I can
will light- have a beauty of a lavender candle
to light which is burnign for the USA too- but
the one I was talking about is in a certain shape..very
male.. any idea what I am talking about? yes,
you got it, that's the body part I am talking
about hahahahaha ( well at least it melts when
it gets stuck OOPSY) Rutger, can you wear some
kind of sling for me? with this shaking and fainting
and weakness in the arms at the moment I can't
hang on my own, so like to hang like babies do..
-I won't drool, and don't have to be changed!
MWAH you know what I mean.. just hanging sweet
man! LOVE didi

Mon
September 10 2001
Message: HI Rutger, ( oh my.. above me the neighbour's
dogs are howling.. would that be a coincidence
now I am writing in the gb, home of the wolfies?
ooh can't hold it.. AHooOWOO WOWO WOoWoo) So,
did ya caught a cold already, from the heat suddenly
into the rain and early fall from Europe? hope
not of course! But it wouldn't surprise me.. glad
you're a little closer to home.. guess we mess
up your guestbook with our excitement huh? sorry
can't help it sugar! I am about to throw myself
into the world of dough, cinnemon, apples and
much more, not to forget the amaretto, hehehehe
* hic*.. Lettie, my nurse was here this morning,
checking on me- preventing I do too much, and
tomorrow she'll be here to taste that infamous
pie of mine, and see that cazzie-beast-twintwit
she hears so much about. She'll be here wednesday
again to pamper me so I can rest up from tomorrow
and get some energy back for thursday.. I know,
only a few days with company but for me it's like
I am planning a marathon. Mom's worried that I
talking myself so high, with laughter and silliness
that I overdo it. Sometimes I do that, true..
Can't prevent overdoing it actually, 'cause one
day with company is already more then I can handle,
but hey.. if I restrain myself because I will
be totall loss when caz is back home, I won't
ever do something nice and would always be 'just
ill'.. nope not me. I am alive, so I live. I understand
Ger's worries, even Lettie shakes her head when
I am as pale a ghost but what the heck, then I
am good competition for Casper ( he's a friendly
ghost.. wonder what I would be.. ghost bitch or
as the ladies here would say "teef-ghost"..)
nah.. we'll see. Rutger, you brought people together
by having this site, not knowing who's on or would
come to see it, a group connected, friendships
have grown within a year and next to a group of
close friends I would LOVE to hug to pieces, that
cazzie beast who's coming over now is has become
my twin-twit. ha, she's a lot in the gb, but even
more in my box, and we know eachother through
and through..that's a gift, from life and indirect
from you dear bear. ANYTHING, to be 'me' with
my friends as long as I can be. no matter the
consequenses..and of course I will be careful
with myself. ok enough waffle this starts to get
mushy... Uhhm gotta let go of your neck whilst
baking that pie, but after that I will climb up
on you back and just lay dead for a while.. so
be available please! MWAH hugs and see ya soon,
AHoOWOOWOOW WOWOOWO WOWOoo Didi ( PS: Swoosis
Judi, always welcome here too, and if I could
I would try that mexican soil to wheel through
and listen to mexican music and dance the swooshboogie!)

Sun
September 09 2001
Message: Afternoon Rutger! Wow, great piccies
you've spoiled us with! Thanks for putting a LARGE
piccie in the GB, finally one I can enlarge so
well with my magnifying mode in my mouse that
I can SEE it!!! yeehaa. (one day there will be
relief puters, no doubt.. boy would I feel my
fingertips raw! And I assure you I am good in
feeling.. haha eyes on my fingertips) It's sunday
and as an old fashion Dutch Sunday is supposed
to be, it's raining. Not men. Tyres from the cars
are making that "SHHHHHHHOOFFF " sound
and the wind is quite strong. I like it. sit with
a cup of tea and such. But, hope it'll be better
next week Cazzie my twintwit! AH, my bro is just
walking in, didn't expect him but.. here he is!
hurray. 2nd time this week. not that I am able
to sing a lot now I have those extra side effects
from the HIV drugs, but a chat and a laugh is
the best medicine I always feel. Hmm let's do
it the schwarzenegger way "I'LL BE BACK!".
Put some earplugs in dear bear, I probably will
sing off key every now and then but what the heck..
since I am still hanging, would you care for a
dance? yuk.. makes me think of Eric Clapton's
video.. nope. just listen. LOVE and all have a
good sunday! ( caz, we are already planning here,
even mom is excited. seems you're gonna be pampered
the 'Ger way'.. ) BYE! AHooWOWOoo WOoWOWOoo WOWOo
and zoentjes and thanks to the webmasters! DIDI
( damn.. had to correct that, always write DUDU
first..yeh, I am a dodo.. I know)

Sat September 08 2001
Message: Hi Rutsydutchie, how's life? bouncing
back to Europe soon, better buy an umbrella..
it's ~!@#$%!!&* weather! My nurse had planned
to go with me to a smal fair ( sp? fayer? pff
sort of market) here on the square but it is raining,
and not too little either so it's a no go. Maybe
for the better, 'cause I am on double dosage of
my hiv drug now and it hits me hard. let's hope
it's only my body adjusting to the stuff. Tired,
mega-swooshing (JUDI help, not only going to the
right, also to the front...we need a 3rd swoosher
LOL)and my stomach knows a nice little trick..
playing flip over, so I am embracing the toiletpot
a little too often.. yuk. Well, you probably found
out by now, caz is coming to visit coming week.
and yes, I am gonna bake a pie for her. amaretto
apple pie. -want a piece? come and get it! worth
a try bear! nope, I am not really * hiccing*..
not the way I feel now. can't say I won't put
my finger in the amaretto remains when the stuffing
is out of the bowl! ( and into the pie...)- LUcky..
you poor cat, those hormones are flowing, not
your fault! (snuggle into miss shaz's neck and
purr softly, move your whiskers slowly over her
jawline, and lay your tail in the back of her
neck, I tell ya, she'll fall for it or she aint
no woman hahahahaa) Hope the webmaster can clean
up again.. even though everyone had the right
to speak his or her mind.. then again, it's not
up to gb writers to say wheather we are dull,
stupid or unwanted only one who can say that is
you Rutger.. maybe only one to stop this is also
you.. dunno. LOVE and lay your big shovelpaws
on my head.. need some bear energy to at least
have a good week with caz, my twintwit. I'm hanging
( not doing what I suggested Lucky to do with
Shaz, -my rabbit Fucky already does that with
me, except the tail of course) and smoochies!
Didi -ok one howl.. AHoowoWOOo WOoWOoo WOoooo..
ZZZZZZZZZZZzzzzzz snore... snore..

Thu
September 06 2001
Message: Hi rutger, -just back from the hospital,
no news, only bloodcheck and telling the nurse
( and 'hand picked stand by doctor' what side
effects I have) and they were extremely friendly
for a change. even offered me coffee!!! wow! -I'm
very tired, we waited one and a half hours for
the taxi to get be back home, but can't escape
from GB.. hahaha, HAVE to be here. -Tinky dinky
( oh my.. that sounds like a teletubby...)you're
not stupid, gullible or what ever.. IF it was
a hoaks, we all fell for it. No matter what happens,
never forget this was an unofficial nomination
in the first place so not likely that it would
screw up anything for the bear, and besides..
if his bearpaws would type in the site's address
he would see so many wonderful messages about
his work that I think it's nothing but good. good
things last, the ( maybe) bad thought or silly
thought behind it will be drawn to the back, and
finally vanish. -Jan, let me help ya out of that
jacket.. ( handcuffs are much more kinky!!! )
Good typing with your hands on your back though!
LOL And swoosis Judi, tehehee poor rutger with
that fly swatter! you and I left-right swooshing,
each with one hand holding the racket and yelling
"DOWN BOY, DOWN" hahaha oops.. sorry!
okok.. I stop. when I am tired I talk nonsense!
MWAH rutbear, see ya! don't drop me! DD AHooOWOoo
WOWOoo WOWOoo WOoo oooo ( LESS THEN A WEEK TWINTWIT!!!..yeehaa)

Wed
September 05 2001
Message: Hi Rutgerbear! pissing in the wind huh?
now that would give an artistic look on your pants
sweetie.. unless it's from a driving car ( oops.
sorry, strange imigary here LOL) Last night I
couldn't get on line, no RH site, no wolfsisters..
PANIC. so, sat with mom (who says hi too) and
what do I feel on my foot? a huge spider. I know,
they are only useful etc etc but when I see a
5 cm spider ( once I bowed over to my foot, -hurray
for those extreme loose muscles I have)I really
don't think of those creaps as useful. All I think
of is HEEELLLP. Now, you must know, we have a
new toy here. an electic swat. ( hope that IS
what a fly hitter is called in english..) it is
sadistic, I know, and first didn't want to use
it. I already called it our Texan swat, but with
this spider already crawling up my leg (!) I had
no problems with it anymore. So, mom picked up
the electr. swat and handed it to me from the
other side of the table. I reached for it in a
hurry but didn't see anything from that distance,
so I didn't know she handed the 'racket' side
to me ( the part where you hit the bugs with).
I grabbed in the strings of the swat and mom accidentally
pushed the button.. OUCH OUCH OUCH OUCH! What
I said you really don't wanna know hahahaha still
have a stiff thumb! I made such a noise that even
deaf dad came out of bed to see what was going
on. and mom first pissed, then laughing her ass
off because of my shaking thumb and -literally-
shocked look. ah well, that's my punishment for
wanting to fry that spider! -and the spider..
never found it anymore. brrr.. creaps. And right
after mom asked "and, less swooshy?"
I said no. She said "oh a pity, otherwise
I would hold that swat to your butt every morning
to wish you a good day" of course, you can
guess.. swat jokes all day now. .. beauty of a
poem Rutger, now only wish it was in audio LOL
.. Judi ( or Hudi LOL) poor you! as if your head
hasn't had enough to suffer! an inner ear infection,
ouch. well swoosh sister, hang on to the bear
and to me, if I swoosh to the left and you swoosh
to the right we are stabile hahaha. HUGS. ...
Collette, thanks for the updates on the award
thingy, but honey,-now don't take this the wrong
way- but can't you give the updates in a little
shorter version? it'll go on till January.. and
don't ya think that will get a bit boring? I already
scroll over, just thought better say so. hugs.
Well dear bear, think I gotta give your neck to
cazzie..poor sneezing twintwit of mine. But I'll
keep hanging. no matter what bodypart I have to
find. leg will do. I am used to sit LOL but uh..
please don't piss in the wind while I am down
there!!! Smoochies, AHoOWowOoWOOW WOOWOWO WOWOOooWOWOWOoo
Didi

Tue
February 26 2002
Message: HERE I AM, TRY TO WIPE ME OUT: YOU CAN"T
SUCKERS, NOT ANYMORE... take the step to tell,
as a first step to love yourself, and recognize
pain and tears since we all allow to have them.
we are unique, so is everyones specific pain.
not worse then other's not less then the other's..
I hope to see some smiles amongst the intensity
that is quite eating some space here as well.
Love, and a silent scream of anger- gagged emotions,
as they were when these emotions took form to
only echo through my own ears. dd

Tue
February 26 2002
Message: Hi Rutger, or actually.. fellow GB writers,-
I am proud of everyone who is able to tell about
their history, rape, what ever. I never came to
trust someone so completely that I told all about
my history in that area, but doesn't take away
that I've been there (normally my twintwit would
say, been there done that got the t-shirt..) but
in this case that swings on another thing.. tshirts.
I think not knowing how to express the anger is
a victims biggest handicap. Is it anger? no, much
more. Wouldn't fit on a tshirt. ( you do know
bear that you are almost bound to wear slogan
tshirts for the rest of your life now you started
this? LOL) The Gb feels a bit heated up,-didnt
read it all but from what I read it's.. chaotic.
Maybe only in my feverish mind, I don't know.
Maybe too much too close to my own life, -and
that for someone who always tells more then people
want to hear.. I know, daft, that's me. I know
that a lot of people who read, write or just visit
from time to time have had bad experiences, in
all fields earlier written about this last week,
or in one, or some fields. That's not just life,
that's a sort of silent bond between us all. We
feel safe here, dare to speak about it, sometimes
in very well used words, or just in fragments
or less. That is what this GB kind of invites
you to.. it says we are safe here, no judgement
( except for the odd ****h*le who tries to give
us our need to defend ourselves back.. which won't
work, not with me anyway) But, even though for
me -for instance- a huge part of my life has been
ruined by topic 2- rape, and since quite some
time now also by topic 1, aids is trying to break
me, there are so many good things in life. friendship,
respect, love from and to others, more important
( and very difficult for qutie some rape or assult
victims- love for yourself) I hope gb can be filled
with.. colours. All colours- from dark to light
and back, all shades, that is trust, that is honesty
and what is more important then that? Without
a safe harbour no hope, this gb is that harbour
for me, and for a lot more folk. Open up, take
that step to say, HERE I AM

Fri
February 22 2002
Message: HI all, hi daddyblue-eyes, -only wanted
to wave at ya. Sarah, I'm 'ok', tired, bruising
again.. call me a cameleon.. nice change of colours..
only not really comouflaging LOL ( glad this time
under my shirt.. except the one on my hand which
is still not gone. Been busy with recording ..
went on mixing and singing in, but still forget
I can't do that the way I used to so mom had to
pick me up all shaking.. after some fruitjuice
and sitting in the living room I was ok.. even
though still a bit trembling. an hour later I
HAD to go back.. the idea that a song is almost
recorded except this or that part.. no can't accept
that. so I went back, -then felt that I had to
leave it as it was.. no eneregy. One peek in gb,
and then BED. Back starts to play up again, so
probably have to spend more time in that beddie
bed again. Hugs, everyone have a great weekend!
and rutgerohrutgeroh... Weekend's near.. no fingernails
left.. smoking an extra pack of ciggies.. hanging
around your neck, ( nice of ya to blame some wrong
moves for the ol'knees hurting again.. while we
know it's my weight around your neck that made
them scream for some concideration hahahahaaha)
MWAH toodles- and ZZZZZZZZzzzzzzzzzz...

Fri
February 15 2002
Message: Hi Rutger.. Oh my.. a surprise? ( if
the post works as shitty for you as it does for
me and some wolfies it's gonna be just in time
for my birthday hahahaahaha- that happened with
my friend Craig... sent him two packages for Xmas
in November and he got one just before his birthday
in January, and the other came back to me..that's
not just a duuuuuh that's a major DUUUUUUUUUH!)
but anyway I drift off- as usual- I am soooo curious!
glad I am not a cat like in the saying.. even
though I'm often referred to as the tiger..uhhm
thinking and talking myself in knots here LOL
That's gonna be polar-bearing ( as Cazzie calls
it, - meaning my 'didi-BritDuch' translation for
the Dutch word 'ijsberen') to the letter box and
back... ** So..you did it again huh.. man we should
bet on what you loose every time you travel by
airplane.. winnings to the foundation hahahahaahaha
Hope you do get your suitcase back though. **
I've had the weirdest, maybe a bit disappointing
phone call with my nurse. She broke her shoulder
a little while ago and therefore she can't help
me. Ok, normal. A bit problematic though because
the other nurse I could 'use' ( rotten word!)
didn't function and has not only been fired by
me, but also by the agency. he ho. But.. my own
nurse said she would have to go to the physical
therapist this week- it's Friday so the week is
over- and she would hop in for a cup of coffee
and get a bit up to date with me. Nice I thought.
Mom saw her at the supermarket, again the same,
she would hop over for coffee after her therapy.
This morning I had my contact person at the agency
who arranges everything for me- I do the interviews
to see if a nurse they find for me fits etc. He
had 3 nurses in mind but not sure if they will
take over from my nurse, at least for a while
till she can work again. ok, nice, hope they find
someone- better 3 so I have more chance there
is always someone I can call in for help. He asked
me if I have contact with my nurse. yeh told him
the above. Then called my nurse.... wondered why
she didn't come for coffee, was concerned, thought
she was in so much pain she couldn't even walk
.. guess what? She's in Chzechia -or how ever
you spell that. Bit grumpy, said she had too much
on her head and pain so couldn't stop for a cup
of coffee- never been to that therapist, she is
in Chzechia for a week now, and next week Friday
she'll be home, after that she will contact me. DUUUUUUH??????????? Someone who said she was my
friend more then my nurse, as if I am her kid
sister she said. Of course, she shouldn't be on
vacation- she is listed as ill, not as on leave
like days off or vacation. She probably feared
I would tell the agency. I didn't and wouldn't
have if she just had told me. if someone says
she will drop by I expect her, so would've been
nice if she just had cancelled and told me not
to call for a week. Damn. Trusting someone with
your body, naked, vulnerable, trust her with your
very private matters as at the doctor's office,
trust her when she has to help you pee or poo..
and trust her when she says she is my friend rather
then a nurse only... I may be weird but some trust
has been broken. ok, I waffle too much in here
but where else can I grumble? She knows I depend
on her- she is the best nurse you can have. if
you don't listen to the bullshit about friendship
that is. She knows I can't really do anything
about her behaviour 'cause that would mean I loose
a nurse will need more and more... I HATE it when
I am pushed in that corner.. depending on others,
not by free will, simply because there is no choice.
And she sure knows often how to make me feel that
that's the case. The more I make her see I am
not a helpless little moron, but her boss and
even though suffering from memory problems a quite
intelligent human being, she pulls the strings
more tight and gag me, make me sit and wait. it's
a nasty taste of how people suddenly can show
their true faces, especially when you have caught
them on moments they don't have their act ready-
like when I unexpectedly called and she picked
up in Chzechia.. instead of 5 min from my own
home. pfff I said I had waffled enough but still
didn't shut up eh? hahahaha ok, over and out now.
kisses, hugs and the rest of that mushy but lovely
stuff, -hanging around your neck dear bear....
and trying to get some hints out of ya as a good
curious wolfie would do! Didi

Thu
February 14 2002
Message: Hello everyone! OOoooh Thanks for the
Valentine wishes, ditto to all of you, double
ditto to you Rutger! Normally I let Valentines
day pass by- a few years back mom gave me a Valentines
card ( yes gave, not sent.. would be stupid both
living in the same house and still send it) When
I was little she also sent me cards, and because
I always was so disappointed that no one saw me
as him/her valentine she sent me several cards...
from my bear, from my pet, from my doll and even
all the dinkytoys I had... duuuh. One Valentine
card still hangs on my closet door... Sylvester
the cat ( you know, from Tweety and Sylvester)
with a bunch of roses.. that was in 1994.. after
that we skipped valentines day. But now, with
so many friends and friendly people Valentines
has a meaning again. So, instead of a card ( would
be impossible with so many people...) I write
here, to tell everyone who cares about me, everyone
who became close friends, regular chat partners
and 'once in a while waving GB people, that you
all are my valentines. A hugs HUG and 3 kisses
like a good Dutchy does LOL. **I'm sitting up
for an hour or so, have to have a day or more
bed rest to be able to sit up and do things. That's
gonna be the new routine. The drugs against the
spasms work as good as can be expected. The spasms
won't ever he really gone, same goes for the terrible
pain, but this is such a difference, so good not
to have those awful spasm attacks that I can't
be more grateful for doc P and the drug itself
to be in my corner. but, every 8 to 10 days, sometimes
even 5 days or less, I have to have bed rest,
otherwise my back is killing me. -so, no long
chats or mail.. -my pee and drink break now and
mom had put the pc on so I could wave here. You
can imagine she is the most important valentine..
and not only on valentines day! ** hehehe BB,
the moment I hear wolfie paws scratching on my
door I will start to howl ( from sudden wolf-stress
and happiness LOLOLOL)** Lucky's tail smashed
by a door, and collar taken off? I HATE people
who do that to animals. We saved one cat from
her sadistic owner.. she died after less then
a year- her jaw and skull were broken.. but at
least she had some love in her last year. Poor
Lucky, mizz Shaz, give him an extra rub under
the chin for me please. Ok, maybe I forgot something
or someone but can't sit any longer ( thank heavens
I can type pretty fast and just burp out what I say without thinking..ok not always wise to
do so but it's sure saves time hahaha) LOVE YOU,
Didi ...** PS: hanging 'round your neck even though
I have to lay in bed.. oh my... no no no not thinking
naughty thoughts, -as if anyone would believe
me- LOL MWAH !

Fri
February 08 2002
Message: YEEEEEEEEEEEEEHAAAAAAAAAAAAAA! get out
the flags, get out the trumpets LOL The scan showed
a lot of shit- clearly irritated from previous
meningitises ( if that is how you spell it...)
and yeh, a shrunk brain volume- not that it's
the size of a peanut, it's only a marginal bit
smaller, but it does indicate that that's busy
in my head, but no snow flakes- meaning aids dementia.
I am soooo happy. I mean, I can handle a lot but
not if my brain is going to jelly. But, since
there is a lot of damage up there, doc P kept
telling me that this just might be too early,
that it still can develop. Yes, I know. but a
lot of aids patients face aids dementia on one
point, sooner or later. I am just happy that it
isn't there right now! only.. now we have to check
what the heck the symptoms come from. He says
the memory problems are quite severe and he will
think about what to do next. might be a neuro
psychological test- also used with Alzheimer's
but of course not only of use with Alzheimers.
Or, there might be something with my medication.
Also a possibillity that the spasms I have overload
the brain- because the scan only shows how it
all looks up there.. not how the info works -
or doesn't work. So, still a way to go before
we know if my brain, my 'me' can be fixed. I do
hope so! Pills for the spams increased in dosage..
the highest dosage now but the side effect is
getting a bit nasty, we hope it gets better once
I use a little longer, otherwise we have to scratch
a whole line of drugs.. and the line of drugs
we would have left isn't sunshine and roses either...
or actually.. it is.. it gives ya hallucinations..hehehhe
as if I am not crazy enough without it LOLOLOL
OOOOOOOHHHH I feel like partying..tired as a dog
but relieved.. and mom is smiling again- with
some reserve..because doc P kept saying we might
just be too early to see what is going on.. but
we know at least that the memory problem which
I have- quite severe- is no aids dementia because
with these showing symptoms I should've quite
some flakes swimming up there in the brain fluid
and that is NOT the case.. Gotta call him wednesday
again, will be checked and stand by for sudden
trips to the hospital for a while. now I can take
my nap, and I try not to think about what it might
be, what can happen, or what might show later
if doc P is right and we are too early with checking..
I only want to know about right now, and that's 100 times better then doc P feared. let him think,
let him worry, let him figure out what to do,
let him think about what will most likely happen
once everything gets worse. I've got just about
the energy to cope with all this shit day by day,
and that's what I'm gonna do. Yeeehaa ole oleee
olee olaaa ( singing) Byeeeeeeeee Didi

Fri February 08 2002
Message: Hi Rutger.... still no news.. doc had
an emergency on his hands so have to call him
later- so now I am trying to sit up longer then
I actually can..and then it's not sure if he will
be able to talk to me the time he asked me to
try again ( between 3.30 and 5pm) so, sitting,
hanging, ( literally this time to give my back
some space) hate it that I can't sit up like a
healthy person. grrrr. - Hey Renee, polish your
mills, and practive your wolfie howl gal! it's
be ok, I bet you all will have LOTS of fun! Mo
said I'd get piccies from this gathering of howlers
so I can't wait! I am so happy you all get to
see eachother.. and sooo sorry for Pammy.. boo
hoo hooooo snif snif..distances in the USA are
so damn big. Not like here in Holland. Oh, and
Hopetry, have fun on your journey, never feel
guilty for being able to do something not everyone
gets a chance to, if everyone was as homebound
as some of us are the world would be a very sad
place! Pamper, love hug, kiss - and the rest-
that guy of yours, and enjoy earths biggest treassure:
the ocean! ..-nervous tiger here.. nervous ger
here.. tick tock tick tock.. why does time go
so slow when ya are waiting.. tick tock tick tock
still not on 4pm.. gotta wait till 4.15.. tick
tock tick tock one minute later..arrghhh if I
still have nails after I have called doc P it'll
be a miracle hahaha, love to all -oh and if you
start sneezing bear, it's me. I dropped a bottle
of perfume over me and even after a long hard
scrub it's still not gone from my skin ( YUK tester
perfume and I DO NOT like it.. yuk yuk yuk) even
a nose that doesn't smell that well will curl
up from it so better put some earplugs in your
nose hehe.. oh my.. I can picture that, oh my!
ok, stinking and hanging ol'bear! almost neurotic
nervous Didi

Mon
February 04 2002
Message: Hi papabear, friends; -no, no news yet,
just had the MRI, results should be in doc P's
hands tomorrow, if not then on wednesday. But
anyway, even just going for an MRI was something
to ROARRRRRRRR about -almost had to laugh, if
something goes wrong it has to be with me..of
course.. some rule up there mr big? * didi rolling
eyes up to the sky*- started when I got the letter
with the date I had to come for the MRI. Ok, faster
then I had thought, but, it did say that I had
to confirm the appointment. Ok. No prob. It said
you could email it, fax it or do it by phone.
Tried the phone but there the pre recorded message
said, that you better email or fax, 'cause they
don't have enough people to answer all calls.
I don't have a fax machine, but hey.. I am the
Queen of email so, nice and easy. Day later got
the email back. as many of you probably know,
that is something that happens sometimes. server
playing up bla bla. sent another one 2 days later.
Didn't get it back but wanted to be on the safe
side, 'cause the letter said your appointment
will be cancelled if you don't confirm. I called..
again the tape plus the message that it was better
to email since there were more then 15 people
before me waiting to be answered. Next day still
no mail back so thought it was ok. .. .. Friday
night, 6 past midnight -saturday morning so to
speak, I got my email back... connection not permitted.
yeh nice but I had to be there today, monday and
in the weekends they aren't there to answer the
phone. Panic. Then I downloaded a fax program
and hoped to be able to fax a message about it,
in hopes they hadn't cancelled my MRI. That was
part one from this slapstic.. part two started
today. The letter with the little map to guide
ya to the MRI was very clear, at least, clear
in how to get lost. Poor dad with his sore legs
(the man is over 70 y.o.!!) walked with me, pushing
the chair and all we could find.. no MRI waiting
room. After asking 5 people for directions we
found someone who sent us the same way as the
map said but with a little more points to hold
on to, like a sculpture on the right, then turn
to the left, you know.. I wanted to hit someone
when we entered the Radiology waiting room- the
one we had to be, but no one had said radiology,
and it wasn't written on the map either. DAMN,
if I had known I wouldn't have let my poor dad
walk around for 20 min.. I know that way by heart. within 3 min I could've been there if we had entered
through the outpatients clinic! so, I went the
desk and hoped they had had my fax. nope. no fax,
no email. "Email? why did you want to email
us then? did you want to cancel?" was what
the lady behind the desk said. Now.. if you would
like to see a real stupid but slowly getting dangerous
face you should've been there. I boiled.. Threw
the letter on the desk and showed her. She pulled
her brows and looked around. "we don't have
that fax here, that's at the other MRI ward, you
are here for C1, the other is F. and email? noooo
that's not yet active. People only call if they
want to cancle, not to confirm it." then
she looked at me, shook her head and asked "didn't
you come from back there? why didn't you come
throught he outpatients clinic, you've been here
enough to know where radiology is, seen you before."
Ok.. lost it. Yelled through that room I wasn't
the imbecil who printed that map and letter! -she
did show it to the head of administration there,
and that woman appologized and told me it;s something
that they will use, but someone printed it too
soon for radiology. other wards have it already.
-no, no one ended up with a black eye but grrrr.
However, I didn't have to wait, they called me
in right away. Almost an hour of awful noise -no
music, don't like it with the sound of the MRI
already being too much. They did try to put some
pillows under my legs and back to prevent spasms,
but the neck has to be in that precise position
and yeh.. that made me get a spasm during the
scan. they were prepared, doc P had sent them
all what they needed to know also about it not
yet being under control. so, they took me out
of the machine, waited till it was over and then
put me back in ( felt like a fried chicken in
the mircowave, turn it over and put back in on
700 watt for another 15 minutes LOL) Pfff.. my
first stop after the MRI was the coffeeshop- with
that stomach of mine it would be a no no but I
needed it, -that or something much more no no
then no no sounds like -yeh I know, I am weird-
booze of course. so, after my coffee the taxi
bus arrived and now wait for the talk with doc
P tomorrow on the phone. -oh btw, some asked me
if I'm not claustrophobic in the mri- nope. Not
at all. yeh I do have some good things too hehe
I like small spaces, if the damn thing wouldn't
have been so loud I would've fallen asleep! -PS
what was your name.. ??hopetry ( forgot the first
part of the nickname) everyone knows by now, so
forget that some don't know what I'm talking about.
Sorry. I've got aids, I'm 31- in a few months
32 years old. thanks sweeties for thinking of
me today.. the scary bit is tomorrow if he has
the results. MWAH love ya -shall we neckhangtango
Rutger? rose between the teeth not needed, you
only have to wear a bow tie! luv'nstuv * Didi
*

Sun
February 03 2002
Message: Hi daddy blue eyes, Thanks for the loving
words MWAH! ( someone asked me the other day what
the heck we mean with mwah.. it's the sound of
a kiss duuuuuh) Just got a reply from a friend
of mine who said I sounded bored and sarcastic
in my email to him.-he knows me for 7 years so
he knows that's not me.. so I hope I don't dislay
the same 'tone' here. I'm just tired. My bro has
been here today, we sang a little. not too much.
I let Rem do the work if I can't LOL. But,a few
days of stomach bleeds does make ya.. dunno, zombie-ish.
Glad I had no bleedings today, maybe it has stopped!
I hope so! probably starts somewhere else then..
every now and then I feel like a dalmatier dog..
can call myself lucky that I don't have bruises
in my face!! duuuuh! Think I need some gooooood
sleep.. then I am back to 'me' again. tomorrow
the MRI.. cross your paws for me.. this little
( ok.. not so little) deedle is quite chicken
for the outcome of that scan. Anyway, great pics
bear, like the menu pic! inviting open collar
LOL Ok, back on the neck again.. But need some
help to keep me up there! ( you need a baby sack,
you know, those moms and dads who carry their
baby in a sort of back pack on their chest? ok
you would need a HUGE variation of it.. -and it
wouldn't cover just the chest I'm affraid.. 1.84cm
and then not to speak of the weight, but hey..
I like the idea HAHAHHAAA poor man, only the idea
would give ya nightmares! MWAH ok, end of loonytunes,
start with Clooney tunes? hmm I really have no
idea what I am saying anymore.. ZZZZZZZZZZzzzzzzzzz..
z..zzzz. nap time. * Didi *

Fri
February 01 2002
Message: Thanks Rutger, kiss* And everyone, thank
you for your sweet caring words as well. I showed
GB to mom, she's touched - and that doesn't happen
that quickly with this rock of a woman! Thank
you all, *hugs* and after the testresults of the
MRI ( is on febr. 4, results probably next day
if doc can get his hands on the photo's as quick
as he hoped for) I will write again! Love to all,
Didi

Thu
January 31 2002
Message: Love ya too Eva, Hi Rutger bear and friends.-
This morning, writing in my diary about the stomach
bleeds I have since a day or two (yuk.. damn platelets)
I wrote something about mom and me now this is
starting a bit- real bleedings I mean. It scared
her.. as if 'it' has begun.. she didn't dare to
let me sleep, he kept checking on me. And what
scares her even more, that I am not scared. That's
only because I know this is just a minor dripping
bleeding not a real fountain, not that dangerous,
only annoying and yeh.. painful. So I put my thoughts
on paper- better said save my thoughts in the
computer and this is what came out.It may sound
a bit dark, but I am not down or anything, just
coping..-pretty well I think- only thing I won't
be able to deal so well with is if my brain is
busy with changing into cheddar cheese... anyway,
here's a piece of my world of thoughts: WAKING
UP WITH THE TASTE OF AIDS_ last night she couldn't
leave me/ 'see ya', or 'night', didn't do/ last
night she couldn't let it be/ I could../ I did.//
Last night the bleeding stopped as it had started;/
suddenly, leaving me a taste of steel / poisoned
blood on the back of my teeth..// A new morning
-another day, and as always, my wishes are her
command,/ Anything,/ Everything/ even more then
before.. -the world, the universe, if she could.//
Again the bleeding started and stopped/ no longer
something for the future / a fact, right here,
right now../ My soul-mate's heart tries, but her
mother-heart can't ignore it../ She can no longer
play the role of the pragmatist / and even though
she will try till the end,/ I see in her eyes
she can't really take it as it comes../ But I
can... / I do... / as long as it takes me to die.//
//*Didi 30-1-2002*

Thu
January 31 2002
Message: Hi Nurse Rutger, get well soon to the
mrs from me! at least she has someone to take
care of her ( and oooh is she lucky.. uhm, not
about being ill but surely with such a hubby..
nothing as nice as being able to lay your head
on someone's shoulder when you're ill.. don't
I know that- haven't got such a shoulder myself..
-hush green monster! GO green monster! -damn..
monster won't leave hahahaha. -Strange times for
me, waiting for tests to be done ( MRI febr. 4th)..
tomorrow I hear when I have to see doc P for the
results and in case it's not good, what to do.
Scary. there is one thing I don't want to hear
that day and what ever is wrong, as long as it
isn't that I will be relieved -till I get back
to earth and start worrying about what IS wrong..
or maybe its all ok.. but doc P said he would
be highly amazed if that was the case, so I at
least prepare myself for 'something'. Ishould
have called him today to hear if I can already
increase the dosage of the pills to ease the dystonia
in my long back muscle and some other side muscle
area's.. till now it doesn't do anything but giving
some side effects- not too bad and if it works
the side effect are worth it ( unless it's taking
away the last bit of sight I have, which could
happen, so we monitor it with hawkeyes) but I
won't know if it will be a succes on the dystonia
till I am on a dosage that should help.. But..
of course, with my memoryproblems it was almost
predictable: when I should have called him, I
had forgotten time and so when I did call it was
too late. ( first thought of setting an alarmclock
at the time I had to call but then forgot what
the beep was about..) Now I can call him tomorrow
morning... pffft. Bleedings because of the low
bloodplatelets get a bit worse, which is scaring
my mom a bit. the low platelets count now give
more signs then only a few nasty constant bleeding
bruises, and we knew it would come to that one
day, but I guess when it really happens, the danger
of it becomes more of a reality for most people.
As for my mom. Somehow I am not afraid for the
bleedings. Not at this level. I still have grip
on my common sense. ( don't say it.. I know..
me and common sense.. it's almost like cursing
hahaha) maybe I still have some grip on it because
I look at facts, knowledge and be practical..
a half day at a time. I have seen people who were
bleeding so dangerously that they died. This is
nothing compared to that. -not yet. of course,
minor bleedings inside can lead to major bleedings
in the end.. but for now that's not the case,
even though it's a start of a new phase in this
aids shit. Stomach bleedings aren't great.. hurt
too, taste disgusting but when it also stopped
and the last bit was clotted it said enough to
me. just be careful and wait- and that's what
I do.. waiting without putting all on hold for
it. if fear dominates all you don't look at the
few pos. things that are still to find in a day.
Funny.. the bleeding problem is one I seem to
have grip on- psychologically seen, maybe intellectually
as well, but if something else would be wrong,
and then I mean in my brain.. don't think I can
pull that so easily.. ah well, that's my daily
shit on a golden plate once more.. - Sammy: I
am SOOOOOO happy that your gran woke up!!!!! big
happy HUGS! And Cazzie me heart... don't have
to tell you here, but do it anyway, I'm with you,
there for you, if I could I would be there to
be also of help for mum and dad, sis and bro..
can't do more then send them my love as usual..
Your mum must feel like she lives in a sudden
surreal world.. she doesn't feel really ill, but
still she is dying. For as far as anyone could
really be able to- I think I know how that feels..
differnt but still similar. been there myself
in a certain way.. and it hits extra hard when
suddenly the body and the illness' physical symptoms
start to fit the picture.. reality can be too
much if you can't comprehend, or don't dare to.
She can call herself lucky with you by her side!
You know I am here for you, with you, as always.
big hugs, squeezes in all colours you can think
of.MWAH. - bye Rutger see ya -duuuuuuuh. Didi

Tue
January 22 2002
Message: Hi Rutbear, already birthday tickles
in your tummy? LOL hope you have a good one amigo.KISSS
in advance, gefeliciteerd! and to Sammy, I am
so sorry for you, it's awful when people get ill,
especially the ones you love, but coma is so heart
and mind breaking. it's waiting.. even de doctors
are often helpless, can only make sure the body
gets it's fluids and such..I have had very close
friends who were in coma, and I have lived with
people who had woken up from a coma.. good endings,
bad endings. I myself am one of the good endings..
have been in coma twice. One time a very deep
one, one time on my way to the deep but woke up
in time I guess. Not one case is the same, but
there are chances that your grandma can hear you,
even though far away without 'receiving the message'
as you bring it. but I know it can reach a patient,
depending on the depth of the coma. I had a period
of being totally gone, and can't remember a thing,
but from some periods- spread over the time I
was in coma (4 months) I do remember things. Not
the same as they where in real I found out when
they told me about it when I asked if it was real
or something from my own mind, but I know it kept
my brain active. Same goes for my mom when she
was in a coma, the way she remembers what I did
is ..odd to say it mild but fact remains, the
contact came through even though the doctors said
there was no use in talking to her, singing, touching,
moving her arms and legs. clear stimuli, overdone
it actually but I think that was the reason some
of it came through. for the both of us that kept
the brain doing something, no matter what instead
of just laying and waiting for it to stop. It's
always worth to try, even though there's just
as much chance that it doesn't work.. I at least
had a feeling that I did something, made me less
powerless with the friends I have lost in coma.
Hmm long waffle, I know. If you want a talk, just
mail me, -I know, you had that offer in previous
in messages but still. wish you lots of strenth,
and hope. for both your grandparents. Didi

Fri
January 18 2002
Message: Hi Rutger, here's your 'thing'- almost
a wild one but no, won't dragon breath on my friends
this time LOL had some answers today, and in a
way that's good, can't get the best treatment
because the hiv is interfearing with this new
thing, but at least there is something to help
me a bit but I am pissed too.. a lot of things,
even the hellhole I was in where i was tortured,
mentally and physically, raped and much more wouldn't
have happened if they just had seen this because
guess what? this is not new I have it all my life,
but it just wasn't seen and now it is so bad we
have to hope i don't stay in the typical 'spastic'
position! grrr. but, now I spit it out.. -count
to 10 didi- at least answers. ok, 30 years later
but my doc at least does his work well, also for
me as a person because he knows I still fight
with the memory of doctors know knowing and therefore
not believing in what I had- and so my handicap
grew out till a huge disabillity. BUT, ok enough.
another day tomorrow.. again waiting for calls
from the pharmacist this time for special pain
killing treatment. Oh and Sad one, as said, we
all have something to fight with, or loss of hope,
Lord do I know it myself. if you need to talk,
see above, my email is there and when I have the
energy I will write. as a lot of others already
offered as well. never without love in this Hauer
world. never forget a lot of hearts are open for
you, even when you shut your own heart for yourself..
that is what this place is all about. love Didi

Mon
January 14 2002
Message: Hi dear friends, a quick message before
I fall off the line again ( darn technology!)
it's sweet how some of the GB friends get worried
when I am so silent. Don't worry too much, I'm
just ill ( again), just beat the shingles ( HURRAY)
and worrying about probably a new and scary phase
in life with AIDS, but no use in telling about
it when test results aren't in yet- one of the
most important tests, and MRI isn't even done
and might take 4 to 8 weeks before it will be
done anyway -grrr waiting and worrying all that
time. When I know more I probably tell some about
it, depending on the end result of course. So,
I am here, coughing, fevering, worrying, bitching
out of fear... poor cazzie ..mwah sis. I do know
now that when it comes to the really scary moments
you only have a few real friends, always less
then you thought you had but thank God for the
ones that are there! well, see you all soon I
hope and uuhm... from what I've been reading it's
a mess here LOL there are some newbies here and
they don't know that this guestbook is more a
community then a GB.. they'll learn don't get
fucked up about it, just write enough to outnumber
them and/or show then how we work I'd say, but
who am I? hey smoochies, Didi

Tue
January 01 2002
Message: HAPPY NEW YEAR EVERYONE!!!!!!!!! Dear
friends, I was pleasantly surprised that so many
people responded to the invitation and joined
us in our 'marathon chat'.. and boy a marathon
it was.. through the -European- day till deep
in the night!!! I am so sorry I wasn't able to
catch the first American new year, but I did manage
two time zones and half way up to the usa! and
I had a wonderful, crazy, lovely time! new faces,
old faces, familar faces, faces finally in chat
again, and so on, but all friendly faces, thank
you for the fun, the sharing of such a special
day, and..thank you -maybe you didn't even know-
for pulling me through pain by helping me in my
attempt to give myself enough distraction to smile
at midnight! KISSSS.. Susan hehehe yes that table
can have a lot but it isn't made for what happened
on it last night.. ah well, nice wood to use for
the fireplace ( yes.. in the purple palace we
have everything we want, so now we have a fireplace
too- ok for my twintwit cazzie a rug to lay on,
amongst other things- too) but we sure were acrobatic
up there LOL. now, a lot of people wonder what
we are talking about but you have to be there
in chat to know what can happen if we start a
party. ANYTHING can happen, if you only have imagination!
hey sweeties, make it a good one, one to remember
with a smile. TO ALL OF US! CHEERS! DD

Sat
December 01 2001
Message: HIall, hi R, -yes Deb, others who wrote
me, it is- almost was since it's going towards
midnight here, Dec.1st.. World Aids Day. Of course
every day I stand still and think about it, for
myself, for others, I send drugs I don't use or
have ordered too much to countries where they
can't get them easily and need them so very hard,
but still, every year the two official days, -Aids
memorial, held here in May and World Aids Day
are special. Loaded. Important. Statistics, facts,
images, stories all is shown on tv the last week
and I'd want to scream.. education is one of the
first things and social most hard things in some
countries, .. we neeeed a vaccine so at least
no more children will die, no more children become
aids orphans, no more adults will die. They say
they are getting closer to the vaccine but when..
when? One day. A blessed day. Love you all, tight
hugs sneezy Didi

Thu
November 22 2001
Message: Sweeties, thank you for your sweet support,
no matter how 'strong' I appear from time to time,
will always need you, more then you think! KISSS
to all! ( yes Rutger you too.. pffff) Tiny, thank
you for your poem, you hit the essence of what
happened last past months, KISSSS for it! wow,
have a lot of pain today, so I think I'm gonna
lay down with an audio book! should watch past
midnight but can't sit up that long.. but it's
planned to do this week Wilma!!! (ok, a squeezed
in message to a wolfie LOL) Uhhm btw no Eva, didn't
howl but hit my paw quite firm -and loud- on the
table while spelling N E V E R... hehehe ( really!)
well, no Turkey feasts for us in Holland.. ( logical
but still.. would have been fun if Holland would
celebrate the sharing between your settelers (
sp?) and the native Americans hehehe too much
to ask I suppose) Ok, Toodles and see you later!
MWAH AHoooWWOoooo WOoooo WOoooooooo Woooooooooo
( choking in a howl icon) DIDI

Thu
November 22 2001
Message: Heeeeellllo Rutbear ( gotta sit careful..
I am hatching an egg ..don't ask hehehe) Today
first day, or actually second, that I feel ill,
am in pain but ooooh I feel so good. Proud of
myself. stood up against doc B.. with cheerleader
at the hall ( fellow aids patients who heard me
at the other end of the ward..yes I was furious!
) Nurse Letty was proud too. This firl aint gonna
be a guiney pig, not when I am fully aware not
when I am in coma or worse. He knew he was wrong,
only never expected me to see it, so now he couldn't
do much else then shut up and do what I told him
to do, which is, back off, be standby if doc P
needs an internist to look at something, and give
doc P the papers/forms for the specific blood
tests a neurlogist never does normally. Doc P
was quite pissed when he heard what doc B had
said, but also said I am ok now, I just go on
as long as I can, and when needed he will try
to ease pain, and treat what is still treatable
( pneumonia's etc that kind of stuff) of course,
the family doctor is needed in this but.. he wasn't
to be reached by P to talk to, but is back on
monday, let's hope P can reach him, if so he will
call me back tueday or so. cross everything my
fam doc will cooperate for once! But.. I feel
so good I stood up for myself. mss dragon breath
was needed and finally came out. MWAH R.. AND,
Dear American friends... most of you will be in
the kitchen, already have turkey stress, exploding
pies in the oven.. heheh HAPPY THANKS GIVING!!!!!!!!!!!!!!!
Love didi

Sat
November 10 2001
Message: Hi everyone, sorry Rutger, gotta step
in here before hell breaks loose LOL Cazzie, Deb,
Las, thanks for standing up for me, protecting
me. Caz and Deb you're very close to me, know
all my ins and outs so you also know what I don't
want, or don't need. But, I do realize that most
people only see a fragment of me here. Most of
the time just the surface, not more then I let
out, or even less. I totally understand the well
meant motivations behind every advice, idea, offer
I get and this reaction in GB might seem to be
a bit out of the blue, hard to understand for
some, -sorry but so be it- because my dear friends
know what is going on, how much of those letters
I get- more then in gb.. this just came on top
of it. Tori, honey you mean well and I love you
for it. You can't know the situation, nor me.
I show my face here, talk about my medical shit,
so it's logical I can't just pick out what I get
in response to that, and that is ok. Only something
has changed in my situation, which is hard to
find a way in, and well meant words can be just
that little bit too much sometimes. and only me
closest friends see the result of that in private.
What Caz says is right.. I have to adjust to a
scary but atleast quallity wise more acceptable
life then with the drugs my body doesn't accept.
Finding a balance between dying and living is
not only hard, it is insane. And since I am not
insane ( unless I am chatting LOL) it is almost
impossible. Aids, HIV is complex, and that on
top of a body which was already complex, ill,
handicapped to begin with it is not responding
to treatments most people would benefit from.
Now, this is not like I am the only one on earth
who has this problem, a lot more people who were
ill before hiv have problems, but heck no one
is the same. I have tried everything, and that's
at the same time also one of the various reasons
for being resistant. Interactions with drugs,
not for hiv but for other medical shit I was born
with make it very difficult to take a lot of hiv
drugs, -doesn't mean I didn't try but the interactions
proofed to be dangerous.. at one point there is
an end to trying. Hard to accept for many people
I 'know'.. but I think it's most important that
I can accept it, or at least try to. time to laugh
and live as good as my body lets me, and don't
waste time anymore! I can assure you all that
my doctor ( the good doc not the less sympathetic one) knows all treatments, registered, not yet
registered, in the USA or where ever and will
inform me if there is anything I could take safely.
Ok.. nuff about this, have fun, make it a good
weekend and no sword fights over me, please. MWAH
didi

Sat
November 03 2001
Message: Hi Rutger, hi GB family, Oh my.. I get
a feeling I've been too quiet.. some friends are
worried because I went hiding a bit. sorry for
that.. I did read GB and thank you all for caring,
and the cards I received were sooo sweet- and
R, thanks for covering for me when I wasn't able
to write.. indeed I needed to get some air, which
I got a day later with Les ( the Cub).. no matter
what kind a rag doll I become, we must repeat
that lessie, we only need some speed to be able
to enjoy it, yes sweets I am in a hurry but then
again, who isn't? I am relatively ok, that is,
emotionally. things suck, and will suck worse,
but at least a change in doctor land for me. The,
now in GB and friends circle known 'doc B' will
be replaced by doc P ( oh oh that is confusing
those shortcuts for names...) P becomes my first
doctor and if doc B decides he isn't needed anymore,
P becomes my only doctor. but.. at least one who
listens to ME and gives me straight forward answers,
and he cares. I thought he was spineless, must
admit, - I always liked him a lot, and almost
begged if he could talk to doc B, but nothing
ever came from it. now I understand he did try
but doc B didn't listen, and doc B was only secondary,
not my main treater.Not he is he can take over..
and he does. He is even going to talk with my
fam. doctor, who always has been working against
me. But, Doc P knows ways to get him into action
and I trust him. it's gonna be bumpy road, a short
road, butI am just gonna try to get everything
out of life as it is now, as long as it there..
just have to do it in faster pace with the little
energy I have ( now that is kind of contradictionary
but heck.. that's the challenge) But I think you
can understand it's not easy to just go on and
babble and fool around right away after these
sudden changes and in some way revelations. Digest,
adjust, prepare and at the same time letting go,
and LIVE.. a tough one but I can do it. just need
a little room ( preferrably THE ROOM LOLOLOLOL)
to be me, in all colours, without too much explanations.
I mustn't think of who I would have been, in what
kind of emotional shape if I had still been as
lonely and isolated as before I found this site.
Back up from friends, a pinch in the arm if I
stay too long in my own world and need to communicate
again ( thanks beeps).. if I hadn't found you
all I would only have my treasure bro Rem, but
all his love wouldn't have been enough to keep me going, laughing, feeling human. Oh my.. I get
sobby. Hey sweets, laugh, lets make a whooooole
lot of parties in chat, and bear with me if I
can't keep up with email as I used to.. I am trying,
believe me!!! LOVE YOU ( thanks for borrowing
your GB Rutger!! hehehee) byeee! D

Fri
September 12 2003 - 01:44:21
Name: Memo From Didi
Email:
Where are you from?:
How Did You Find Us?: NetSearch
Message: i tried to write u letter but it got
deleted when i fainted. i try my best tomorrw.
i think of you today. Jen, i have you as close
in my heart as 2ys ago on this day. the fear of
that day 4ever shared. and everyone i looked for
and with that day, - mike p, remember i was in
panic knowing u had to fly but i didnt know if
it was again over an arab country? wont ever forget
the relief when u wrote me in gb that u were fine.
love and cryimg blood for you and all we lost,
- incl my pers. losses, i miss you Ian, david,
randy and steve. i hope to re-write about how
i am and why i cried blood today. dont forget
me, i won't ever forget you. bless you all. need
to sleep. didi.

Wed
December 25 2002
A Christmas message from DiDi

Where
are you from?: Holland, near Didi's place
How Did You Find Us?: NetSearch
Message: Christmas eve, 2002, Holland,,,//...
Hello dear guestbook friends! It has been a long
time since we've seen eachother. As most of you
know I cannot go online without help anymore,
so I read what people show me, and I write through
a special phone on which I have sort of internet
access. Alas, RH site is not one of the sites
I can go.. - same counts for his chatbox- but
with help of my friend here I am, with Xmas.//..It
has been a year of many set backs. getting more
ill and every-time just barely getting over it
but never coming back to the level of 'health'
I was before each illness. That is hard, I take
morphine 4 times a day now, which leaves me not
much time to be 'me'. The morphine puts my brain
on stand by for hours after taking it, so I won't
feel too much pain. It all sounds pretty bad,
but this year also brought so much good..//..Friends
keep lifting me up, time after time. Friends I
thought I had lost came back, and are, as they
always have been the lights of my days.. the need
to communicate, to tell them how I am doing because
I know they are worried makes me fight till my
last breath to use that thumb of mine and write
an email on the phone. even from the ambulance
only a day ago.// And still, after all this time
the support and love from you, my guestbook family
makes the beauty of this year complete. I know
it was a disappointment for a lot of you that
the surprise I should get through Grazia still
isn't here. But, the idea, the gesture and fact
you do this for me is worth as much as getting
it. Once it is here I will try to thank you all
here in the GB, that is easier for me then writing
so much separate mails. I still think of the times
we had so much fun, here in GB, and in chat. For
2 years long this guestbook was home. The Xmas
and New year's party ... it's a memory I will
treasure for ever. // Not being alone is the most
important when you are this ill. It is a very
very lonely fight.. but knowing people care from
all over the world, and that it matters if you
let your head down or not, thát makes life
as I live it now, worth living. My closest friends
sometimes don't realise it, but they are the hands
that carry me. Without them I would have given
up. The same goes for my mother.. she didn't dare
to have fun without me anymore. she was a captive
in her own home, just like me. But, because I
have two wonderful real-time Dutch friends, and
next to them one who is partially real-time, and
the rest he's 24/7 loving heart by phone and internet
-wink wink Rutger my treasure- and six contiuously
in contact, from morning to midnight American
and English friends, my mom dares to live again.
Yes, I do have fun too. my world is very limited
of course, 4 walls and a bed, yet it is as broad
as the lives of literally ten people at the same
time.//... Thank you for again a great year together,
be it less in the guestbook, it's never less in
my heart. In mind I hold all of your hands and
hug you!...//... I wish you all a wonderful Christmas,
with family, friends and loved ones, and, from
me and my family, a joyous, healthy and loving
new year! Cheers to you all! love, didi

Fri May 10 2002
Comments: Hi dear friends, a step over from the
RH site to this starfishsite.. not a big step
for me though.I hope the children will benefit
from it, the adults learn something, and those
who come and read, make the stepover as said above
will GIVE something. being in the same shoes as
the kids with aids, in another way, another place
but same nasty virus in my system ( together with
morphine now...)I know how hard life with aids
is, and imagining a child in my current position
on that far away island I can't do anything but
cry. Love to all, love to the children, love to
those who love with me.
Didi

Thu
May 30 2002
Message: Hi Rut, hi folks. Been a very long time,
I know. It won't happen often, showing my face
here, but I do try. Thanks for all the nice waves
to me GB friends, Thanks Shaz.. I think you meant
a Didi cat.. but I am not sure. I hardly read
GB and don't really know what kind of animal it
is, but I guess a cat. I'm awake between pills,
morphine. It is hard to find time between nurses,
pills and a lot, a whole lot of awful pain. the
few times I write emails I have help. Most of
the time that is, sometimes I have to do it alone
which costs a lot of energy, too much. so, I write
a line when I can, store it and when it is finished
I send it. Too late often but I can't help that.
Same with this. Most of the time the people I
have to help me manage to write a letter, two
tops but writing in here as well is a bit much
to ask. So, I have saved lines till I had a letter
and now I copy it in here and place it. Writing
is more difficult because of a stroke I had not
too long ago. left hand, leg, part of my face
are numb. Only my mouth -speech- will improve
a bit with exercise (Lord where do I get the energy
to exercise...) but I won't regain the feeling
in my arm and leg. Well, I was in a wheelchair
already, but the left was my best leg, I could
move it, not stand on it so I had some use of
it with turning in bed, staying steady on the
loo ( LOLOLOL yes those things become difficult
when you're disabled as some of you know by experience)
Now the left is almost as bad as the right leg
so everything costs more energy which I don't
have, and also more energy from my caretakers.
I hate it that my mom, Ger, who also is disabled,
severe heart patient has to help me a lot. she
can't but she does it anyway. We have nurses but
not 24/7.. A few days ago my friend Remco asked
me how I feel, not physically but emotionally,
psychologically. 'I don't.' was the answer. 'No
time to feel between struggling through the day'.
Not totally true though. the nights, when the
morphine is not yet getting me to sleep, or when
I am catching breath after nasty bleedings and
more of that stuff, my mind goes everywhere. And
all thoughts bounce back from the walls in my
room. A strange sensation of lonelyness which
can't be solved, can't be taken away because no
matter how many people are around you, the fight
is a fight you have to fight alone. and lose alone.
the few times a week I do get on line, with help or alone I try to stay in touch with some, read
some of the GB if it's copied to me. a world,
a reality I try to keep seeing as mine, even though
my own reality is changing and becoming something
hard to adjust to for those around me. Waves from
you make me keep on trying to realise your reality,
cyber or real IS mine too, no matter how far away.
No matter how my walls bounce my thoughts back.
there IS an escape for a few seconds and the need
to write this long boring blah blah line by line
spread over a week, lines with help, lines without
help. because I know there ARE still people somewhere
who keep seeing me as I was. When I start forgetting
how I used to be, you remember and sometimes even
remind me of it. LOVE to all, big hugs. kisses
Rutgerbear.. one armed hanging is hard, so just
take that rocking chair from Beans of Egypt and
rock me to sleep.. Didi ( DD or Dee or Deb or
Daisy or.. Duuuh I drift off obviously LOL) ME.

Tue April 16 2002
Message: Hi R, folks, ---Heike, Roy Batty is the
android played by Rutger, in BLADE RUNNER. --
waving now I can for a min. Morphine not going
as it should, second one on my arm now, meaning
2 patches, one always put on one and a half day
after the other, each on for 3 days so it's a
bit more then the original dosage but doc thinks
not enough. dillemma, being totally knock out
and less pain or at least a bit clear in the head
and too much pain. And a lot pain it is. Gotta
wait till my body is used to it to see how drowsy
I really will be. that means waiting till I am
a junk if I put it in my own words, words the
doc never will use. stupid, 'cause the fact stays
the same. Pain, such pain I scream in the middle
of the night, nurses having nightshifts.. Who
is this thing laying in my room.. it looks like
me. that's all. Nurses coordinator asking what
makes me want to go on so strongly that I refuse
to go to bed as much as doc wants me to.. I didn't
know, so said music. 'you realise there's only
a very very slim chance you will be able to record
the songs you want to?' Yes dammit. Yes. But I'll
that that slim chance and try. at least try. But
is it the real reason to go on? no. What then?
don't know. A body stops when it's time. Pain
goes on till it's time. Dignity gets lost till
it's time and I have not a damn thing to say about
it. Lets hope the right way of taking it, and
the right dosage -of morphine- will be found soon
so I can listen to my by morphine influenced mind
that tells me I can do some more while in reality
my body wonders where the heck that illusion comes
from. Who cares? As long as it functions it functions.
Wearing out my bod from under pink morph-glasses..
Is this me? Some who know me a bit will shake
there heads, You R will definitely shake your
head.. I asked mom to remember who I was, a year
ago.. why she asked. . Before I don't remember
myself. It's time to..log off. Morphine starts
to throw my eyelids down. See you, when I can.
Love. DD

Fri
April 12 2002
Message: hi R, folks, planned to be in bed, but
sitting in my chair anyway. -the other way around
happened more then I want to as well today, errrr
as good as every day over the last month, and
longer. The day started with a fam decision; our
oldest cat, a half pedegree of 18,5 years old
who is ill for a long time now, appeared not to
be able to see, next to hardly being able to walk
and having seizures. Time to say goodbye. I wanted
to bring her away weeks ago, I know how it is
to have seizures that many.. Mom does too but
Pien was more her cat then any one else's and,
with mom's heartcondition I didn't want to force
her into anything she couldn't handle. But, when
I noticed yesterday that Pien bumped into the
same spots I do I wondered if her sight was gone
now as well and since I already had the feeling
she should no longer be suffering - Lord knows
I wouldn't want to go on like that!- Time to be
the bossy daughter.. and mom understood she had
to let go. poor dad had to go to the vet alone,
mom nor I can come with him in our wheelchairs.
It was ok, I sat with mom, made sure I had her
medication with me. it was needed, but no wonder..pien
was part of our lives since she was saved from
being drowned as a kitten, hardly able to be away
from her mother ( a full pedegree -peach longhair-
who had been knocked up by an alley cat LOL) So,
farewell Pien, -go to the USA, meet Lucky.. -justice-cees-
hahahahaha no wonder you recognize the skippy..
TEEHEEEE I'm Dutch too, so I guess we were the
only ones knowing this silly toy as a skippy ball!
well, finding another position to sit in now and
hope I can lay that darn back down soon. friday,
or monday we have to start morphine, can't hold
it off anylonger..the bit of 'health'( non-health
better word) I have left is getting less and less
because of too much pain. Energy level down so
I have no defence against other kinds of stress,
like it started ( and never stopped) just before
I told here about the nurse aid I call the 'duracel
bunny'.. both doctors- gp and specialist say I
can't get back to how I felt and was before that,
let's say a month ago is even too much to ask,
but with this pain it will be hell, so no other
option; morphine. that and finally some stuff
for my black outs, to inject. My nurse made a
joke about it: 'finally something I can actually
DO! shall we practise?' DUUUUUUUHHHHHH no thank
you, practised more then enough LOL I can do it myself I said.. but smartass she is 'oh yeh? you
really think you black out only partially? you're
a patient, behave like on. say yes nursey.. -NO
nursey... ( darn she is right.. it wás
a stupid remark from my side but heck.. I am ill..no?
no good excuse? shhhhhh!!!!) hey R, folks, sleeeep
well or gooooood morning. night. - eh think it's
not safe to hang while being on morph so I need
a construction around your neck R..you do want
me to hang safely while being a starting morph
junk heh? or ya can use y'r hands.. AHHoooOWOWOOoo
WOoWooooo -sorry couldn't resist. DD

Tue
April 09 2002
Message: hiya! Hehe sorry Rutger but I've got
several questions in my mail box to ask me what
the heck a skippy ball is hehehe, and I think
it's handier to answer it here ( too much mail
and one letter copied didn't work 'cause questions
are not the same) ok, a skippy ball is a large
airfilled thick plastic ball with a plastic handle
on it. Kids ( errr when I was a kid teenager and
adults sat on it too duuuh) sit on it, feet reach
the ground and hold tight on that handle, push
themselves up with their feet and then bounce/hop
along on the ball... if you're good at it that
is LOL if you're not, you hop with the ball behind
you... or ya fall on your snout. I couldn't sit
and hop on it as a child, -impossible with only
one leg working so I had it on a cord and pretended
it was a dog and smashed it around ( good defense
material when kids or my somewhat sadistic sister
teased or hurt me too!) so I pretend to hop (
indeed as a kangaroo!) around on a skippy ball
in this GB fantasy LOLOLOLOL I wonder if the name
came from skippy the kangaroo.. think it did!
bye! DD

Mon
April 08 2002
Message: hiya, just a wave, I'm still here, not
as frequent as I used to be but that's unavoidable
I'm afraid.Don't read the GB that much of late,
but I do hope the spirit and the 'feel' of how
it was, let's say a year ago will come back soon!
- Rutterbutt, nice to see Sarah's entry as entry
of the week. hadn't read it.. duuuh logical after
telling I don't read GB that much..pfff you may
hit me hehe, Sarah I hope you run your ass off
and keep those st*rfish in your eyes. I know,
the people on the Islands have different problems
besides fighting this darn disease, but no matter
where or how, I feel for and with all hiv positive
people all around the world. It's a bit stupid
maybe, but the words 'fellow patients' doesn't
work for me, never did. Here at home and with
my 'lost' friends from different countries, different
continents, we called and call eachother colleagues..
not that everyone likes that.. but we did after
all we fought and fight together ( and are crazy
together.. hehe.) Anyway that's just some silly
babble, all I want to say is, GOOD LUCK! Rutger,
I can't hang at the moment.. shall I try a skippy
ball? bounceee bounce ( do you remember those
skippy balls I wonder...ah well if you see me
bouncing around; that's me on a skippy!) back
to bed. AGAIN. 1.30pm..just realising the time
already makes me angry. It's like I'm ill or something
( duuuh..that was supposed to be funny but now
I read it it lost it's ..what ever.)Wednesday
talk with my family doc ( GP) wonder if he'll
steal my skippyball by pumping me full with dope.
big chance that's gonna be main subject of the
day. so, if anyone sees me bouncing around on
my fantasy skippy ball, hide me please! -eehm
Rutterbutt that long leather coat..what movie
was it.. I should easily be hid under it!-without
the skippyball that is.. a plan? OK , DEAL!. MWAH
. Didi -in an insane mood.

Thu March 28 2002
Message: 'ello 'ello, didi phone home ( ET on
my mind..duuh) It's been a long time since I wrote
in GB, hmm let's feel, does my chair and table
in this imaginative corner of the room still feel
like home? (...) almost. What a variety of subjects
of late, most not really followed by me so I won't
comment on them either. glad that old names still
pop up though. I'm slowly climbing back in the
saddle again; medicine poisoning gave us no choice
but stopping the drugs that kept my spasms under
control. I was so damn ill that I was hardly able
to keep my eyes open. So, I/we stopped the drugs,
which brought back the spasms worse then I expected,
pain almost unbearable but as said.. no choice.
Had to wait till my blood levels had dropped.
(normally there's the option to really clean the
blood but the blood levels of my other drugs have
to stay as they are so that option was not possible..Drat!)
Now we are slowly building the drugs back up again,
and this time I made up my own rules. I explained
the doc that I want to wait longer before adding
another pill to the dosage, because I think the
increasing blood levels could also be used in
my advantage; wait a bit longer and let less pills
build up in my system and find out how much is
needed to create a steady blood level after increasing
sets in. I know, difficult matter but in the end
the doc agreed. we only don't know if even the
lower dosage will increase to unacceptable levels.
In the past I have done this with another drug
and it worked as I thought. lets hope this one
does too, 'cause changing drugs is not exactly
what I am waiting for. If it doesn't work I will
have to though. for now, I still have spasms,
still pain. But a bit less then 2 weeks ago so
I am able to go to chat again. (yeeha!) not every
night, there are still too many days on which
I cannot go on line. that means it's going bad-
everyone who knows me knows I am going on line
no matter if I have to lay in a double knot for
it. But at least I am going better even though
slowly. It'll work out, one way or the other.
Next to the medicine poisoning my daily life has
changed. last 2 weeks there has started something
pretty heavy.. my new caretaker ( not a nurse
but personal support giving caretaker if I use
the translated term for her job..duuuuh) needs
a lot of work from my side. She is young.. maybe
too young to handle this situation. But for now
it looks like I can train her to be exactly what I need. Only.. how do you do that -training and
guiding someone with hardly enough energy to keep
yourself going? She is sweet, only it's like someone
put a duracel battery in her ass.. keeps going
and going, just like the bunny with the drum in
the commercial. She's here every day now. also
on Saturday. it's like I have to build up a relationship
in warp speed.. And of course it is just as heavy
-or worse, for her. 25 years old and being bombarded
to the first and most important caretaker I have.
Also when I would be dying. she takes care of
me, and I feel that I have to take care of her,
for as far as I can. Protect her from needless
frustration, make sure she has a talk group to
go to at the agency, make sure she takes a vacation
-or just 2 weeks someone else to take care off
if it becomes too much. I don't like being taken
care of, in fact I despise it, my worst nightmare
coming true.. and at the same time I am grateful
for it. so double that thinking about it is only
making it worse. Just accepting it -or trying
to- is the only way to keep it 'liveable'. there
are more nurses in the current team I have created
around me at the agency that arranges my help,
but medical things, - or washing me when there
is something medical that would be tricky for
this young girl to handle is more.. distant. fast.
if it can be done in 10 min they will. So for
me this girl is partially my (only) AIDS buddie.
Once I know her better and she knows me better
I think we will be a good team, but accepting
that it is needed that she is here almost every
day which is the case, is not yet something I
really can. One thing today did make me happy..
Mom dared to go to town in her wheelchair, alone.
Shopping. something she hasn't done in more then
a year. I had this girl here, so I was not alone,
as safe as can be so mom had a half day for herself
without worrying about me. I felt shitty, would
have liked some time alone too, I definitely wouldn't
care if I am safe or not.. but seeing how happy
and relaxed mom was made all my personal feelings
fade away. A smile on Ger's (my mother's) face
is worth it. Life's changing. My life that is..
Only my life. The lives around me should not change
for me. Not where it is possible to avoid it.
The lives around me have to go on when I am not
there anymore, that's clear to everyone.. but
they shouldn't stop or change while I am still
here either..that would be worse then wrong. I have help.. I will use it. the thought that I
am helping my parents with it makes me hate it
less on the moments I wish nurses and caretakers
would disappear in the centre of the earth.. or
when the duracel bunny is making overtime again.
I am glad though, that in my changing world, the
net, chat, friends- old and new still have a place.
oh my.. I am chewing up GB space... hehe well...I
don't write that often in here anymore..don't
worry R no new style gb bombs hehe. Now nap time
for me. hugs, -hanging as always! love and mwah's!
Didi PS: HAPPY EASTER EVERYONE, HAPPY PURIM (
sp?).

Fri
March 15 2002
Message: Hidehi Rutger, GB residents! -Milla,
I know how difficult English is for you, let alone
translating a joke, but I think you did pretty
well! ( where can I find that native man...especially
the one with bad eyes hehehe) It's the same old
story here, except for having a new nurse. eehm,
correction, not a nurse but still qualified to
take care of ill people, handicapped people etc.
she's a bit younger then I am -god, it happened..
I'm no longer younger then the ones who have to
take care of me, that combined with those silver
hairs between the black ones ..booo hoo hoo, hehe
anyway, she's great. My first nurse won't be back
for a while, not till her broken shoulder- 3 fractures
in it- has healed, and then still the question
if she can do what she used to do. But, if she
can, which she thinks she will, those two will
make a perfect start of a team. Funny, the new
one's partner is a musician I used to have in
my radioshows a lot. When she told him I had said
I knew him, he had to dig deep to recollect, -the
picture someone needing this much help didn't
fit the didi I used to be at all. When she told
him that I was the chick in the wheelchair at
the radiostation he had said "no, that skinny
little bitch?" - ehh this was meant in a
nice way, at least, back then it was quite handy
to be a bitchy.. but it did make me realise how
long ago it all is for everyone. they went on
with their lives, but mine kind of stopped. My
longing for the old days ( and the 'skinny' part
as well LOL) makes me remember it clearly, vivid,
as if it all stopped yesterday.. for them it is
8 years ago I started,5 years ago I stopped. I
try not to start the subject boyfriend with her
though..yeh I know, protecting my own memories,
since they most likely got idealised through time.
but, no more looking back for now. I got someone
to help me, and if I want to and can, go with
me if I want to get out of the house, even if
it's only for a walk. Well, we'll see how it works
out with the two of us. At least she has no aidsphobia,
I had to insist that she put on some surgery gloves,
'cause I know I am her first HIV patient, and
don't risk having a nurse starting to panic in
the middle of the night because they suddenly
realised they touched someone with HIV all over
the body. Nope don't take that risk anymore. but
it did tell me she is pleasant to work with. Someone
who sees me first, and secondly sees my illness.
most times it is the other way around. And who
sees me like that, sorry, no matter stranger or
relative, -or something in between hehe- they
get kicked out of my life..and not too gentle
either. ok, my bed is flirting with me, -yes honey
I'm with you in a few..hehehe. Take it easy, have
fun, -both GB folk and Rutger- and have some feet
in the air time! Love, hugsies and that kinda
stuff, Didi

Sat
March 02 2002
Message: yaaaaaaaawn..-sorry, about to wobble
into bed- have had some great company today, and
didn't sack in like a pudding, the pudding effect
came with delay LOL So.. dear 'ouwe zeikerd' I
am sorry, must agree with my twintwit, who sounds
like she is picking up a chicken in some sort
of weird ritual where you have to molest a feathered
thing to get the house clean...writing your blobs
of verbal pingpong saves ya from a LOT of stress..
writing it in email is what I do, select, copy,
keep the mail open behind the gb window, paste,
delete mail once GB has swalllowed. what? no unwanted
puter lessons? can't possibly think of a reason
why someone wouldn't want lessons from me, the
most impatient teacher ever. ( give lessons with
a wooden hammer behind my back, just so you know).
-wood will and waiting eh? Starfish's baby burps
are shitty, loads of effort, little hurray's-
but I am sure, that time WILL come. Miracles,
right approach, luck.. and time. Strange to need
time in two ways.. time for the children- stretched
time- and time to be where ya wanna be- speeded
up time.. such contradictions and most of the
time so impossible to do one without the other.
Hm, eyes start to close and not of free will..better
let go of the book, hold on to the neck. yeh,
that's a nice thought. I am amazed that I don't
feel terrible today- had a stomach bleeding last
night- blood out of the stomach is a relieve,
had the worst stomach ache I had in weeks. It
stopped. Don't worry. not yet. Next time you're
pissing warn me, then we close our eyes.. like
real ladies ( fat chance.. I know) think this
little hippo will be dreaming of bruce willis
and Lance Henriksen.. -can't seem to get rid of
bruce, and Lance.. well.. ehh.. no comment. Voices,
clearly. -would be strange if it was the looks..
since I don't see it HAHAHA.. promise to imagine
my papabear's neck in the dream somewhere..in
a papasafe part of the script,hehe. ( damn, when
I am tired I sound like I am on the booze..) enjoy
the weekend, Wave from Ger and dad too. de mazzel!
Didi